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Promises and perils of group clinics for young adults living with diabetes: a realist review Journal: Diabetes Care Manuscript ID Draft Manuscript Type: Systematic Review Date Submitted by the Author: n/a Complete List of Authors: Papoutsi, Chrysanthi; University of Oxford, Nuffield Department of Primary Care Health Sciences Colligan, Grainne; Queen Mary University of London, Blizard Institute, Barts and The London School of Medicine and Dentistry Hagell, Ann; Association for Young People's Health Hargreaves, Dougal; University College London, UCL Great Ormond St. Institute of Child Health Marshall, Martin; Department of Primary Care and Population Health Vijayaraghavan, Shanti; Barts Health NHS Trust Greenhalgh, Trish; University of Oxford, Nuffield Department of Primary Care Health Sciences Finer, Sarah; Queen Mary University of London, Blizard Institute, Barts and The London School of Medicine and Dentistry; Barts Health NHS Trust CONFIDENTIAL-For Peer Review Only Diabetes Care brought to you by CORE View metadata, citation and similar papers at core.ac.uk provided by UCL Discovery
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Page 1: Promises and perils of group clinics for young adults living ...

Promises and perils of group clinics for young adults living with diabetes: a realist review

Journal: Diabetes Care

Manuscript ID Draft

Manuscript Type: Systematic Review

Date Submitted by the Author: n/a

Complete List of Authors: Papoutsi, Chrysanthi; University of Oxford, Nuffield Department of Primary Care Health Sciences Colligan, Grainne; Queen Mary University of London, Blizard Institute, Barts and The London School of Medicine and Dentistry Hagell, Ann; Association for Young People's Health Hargreaves, Dougal; University College London, UCL Great Ormond St. Institute of Child Health Marshall, Martin; Department of Primary Care and Population Health Vijayaraghavan, Shanti; Barts Health NHS Trust Greenhalgh, Trish; University of Oxford, Nuffield Department of Primary Care Health Sciences Finer, Sarah; Queen Mary University of London, Blizard Institute, Barts and The London School of Medicine and Dentistry; Barts Health NHS Trust

CONFIDENTIAL-For Peer Review Only

Diabetes Care

brought to you by COREView metadata, citation and similar papers at core.ac.uk

provided by UCL Discovery

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Promises and perils of group clinics for young adults living with diabetes: a realist review Chrysanthi Papoutsi PhD,1 Grainne Colligan MSc,2 Ann Hagell PhD,3 Dougal Hargreaves,4 Martin Marshall MD,5 Shanti Vijayaraghavan FRCP,6 Trisha Greenhalgh FMedSci ,1 Sarah Finer PhD2,6 1 Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, England, UK 2 Centre for Primary Care and Public Health, Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, England, UK 3 Association for Young People’s Health, London, England, UK 4 UCL Great Ormond St. Institute of Child Health, University College London, London, England, UK

5 Department of Primary Care and Population Health, University College London, London, England, UK 6 Barts Health NHS Trust, London, England, UK

Corresponding author:

Dr Sarah Finer, Centre for Primary Care and Public Health, Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, United Kingdom, Yvonne Carter Building, 58 Turner Street, London, E1 2AB, +44 (0)20 7882 7326, [email protected]

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Abstract

Background: Group clinics are becoming popular as a new care model. This evidence

synthesis, using realist review methodology, examined the potential role of group clinics in

meeting the complex needs of young adults living with diabetes.

Research Design and Methods: We followed a theory-driven, realist approach to evidence

synthesis. Three reviewers screened the articles resulting from a systematic literature search

across 10 databases. To draw on lessons from a broader literature, we also included studies

on wider group-based processes such as structured diabetes education. Included papers were

coded and iteratively analysed using a realist logic. By following the established RAMESES

quality standards, we developed theoretically-informed explanations of how and why group

clinics could work for young people with diabetes.

Results: 131 papers met our inclusion criteria. Models of group-based care varied

significantly and incorporated different degrees of clinical and educational input. Providing a

safe space for interaction in a developmentally appropriate way was deemed important for

sustained engagement of young adults with their care. Group clinics were valued by patients

when they brokered connections and facilitated useful exchange of experiences. However,

engagement was not always sustained if individual needs were not fulfilled in a timely and

time-efficient manner. Substantial invisible work was required to overcome implementation

challenges.

Conclusions: In contrast to widespread rhetoric proposing group clinics as a solution to

increasing demand and financial pressures in health systems, this review suggests that

successful implementation requires careful work to address complex patient needs and

sustain engagement.

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Introduction

The global rise in diabetes prevalence is expected to have serious consequences across

healthcare systems. It is estimated that by 2045, healthcare expenditure on diabetes will reach

USD 776 billion (1). In the UK the cost of diabetes care is expected to account for 17% of the

total health resource expenditure in 2035⁄2036 (2). A large proportion of these costs relates to

managing diabetes complications, such as retinopathy, neuropathy, diabetic foot and

cardiovascular disease, which lead to reduced quality of life and premature mortality (1).

Alternative approaches to care provision are necessary to stem what has been described as a

‘titanic struggle’ against the burgeoning personal and systemic impact of diabetes (3).

Group clinics (also known as shared medical appointments) have been proposed as a way to

address rising healthcare costs and diminishing resources, with the potential to improve

efficiency and to provide opportunities for peer support and social learning, compared to

usual care focused on one-to-one interactions between patients and healthcare professionals

(4, 5). Numerous studies discuss group clinics delivered in a variety of formats and targeted

at different patient populations (6-8).

In diabetes, experimental studies of group-based care for adults have shown improvements in

glycaemic control, problem-solving ability and quality of life and reduced time commitment

for clinicians, compared to standard one-to-one consultations (9, 10). Similarly, systematic

reviews of group care for diabetes highlight clinical benefits (lower HbA1c, blood pressure)

and improvement in patient-reported outcomes (7, 8). Story-sharing interventions for

minority ethnic groups have also resulted in higher attendance and patient enablement,

compared to structured self-management education (11, 12).

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With diabetes prevalence (both type 1 and 2) rising in young adults (13) there is a need to

learn from alternative models of care and to re-design service delivery to better support this

patient group. In England, despite overall improvements in diabetes care processes for young

people under 25, emergency hospital admissions increased for the 20-24 age group between

2005/6 to 2015/16 (14). This increase is explained by a range of poor health outcomes across

a variety of clinical and psychosocial parameters for this patient group, including widening

inequalities (14-16). There are recognised barriers to regular clinic attendance and

engagement for young adults, such as diabetes-related psychological distress, lack of care

continuity and poor satisfaction with the health service, lack of developmentally appropriate

consultations and fear of complications (17, 18). In addition to the direct impact of unmet

healthcare need in this age group, evidence suggests that patterns of poor engagement with

health services in adolescence and young adulthood often persist into adult life (19). Novel

approaches to care delivery are urgently needed to address the specific health and self-care

needs of young adults in tune with their developmental stage and life circumstances, and to

improve their outcomes and experiences.

In this paper we use a realist approach to synthesise evidence on group clinics for young

adults with diabetes, rather than older age groups. A realist review allows us to extend

beyond de-contextualised lists of barriers and facilitators to understand ‘how, why, for whom

and in what circumstances’ group clinics might work for this age group (20). This approach

follows the tradition of narrative reviews that aim to increase understanding, rather than

summarise data (21). We aim to build on previous evidence of clinical benefit to understand

how group clinics need to be implemented in practice so these benefits can be realised for

different types of patients and in different circumstances. The realist review underpins a

theoretical and participatory approach to the co-design and evaluation of group clinics as part

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of the Together study, a wider programme of work testing feasibility and implementation of

group clinics for young adults living with diabetes (22).

Aims

This review aims to explore how, why, for whom and in what circumstances group clinics

may work for young adults living with diabetes (type 1 and 2).

Review questions

1. What are the ‘mechanisms’ by which group clinics (could) meet the complex health and

social needs of young people living with diabetes?

2. What are the important ‘contexts’ which (could) determine whether the different

mechanisms produce intended outcomes?

3. In what circumstances are group clinics likely to provide a better way of supporting

diabetes self-management than traditional care?

Methods

Our methods are based on previous realist reviews and on the RAMESES standards (20, 23).

Realist reviews typically start with an initial set of assumptions, i.e. a programme theory,

about how an intervention is assumed to be working. These assumptions are developed

further by drawing on secondary qualitative and quantitative data (theory building) and

become refined as the analysis of this data progresses (theory refinement). A basic principle

for scaffolding the analysis of the literature is that the resources offered by programmes

interact with the underlying reasoning of individuals (mechanisms). This interaction leads to

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certain outcomes depending on pre-existing contextual or structural factors (also see Glossary

in Appendix 1).

Data sources and searches

We performed literature searches in Embase (OvidSP), MEDLINE (OvidSP), PsycINFO

(OvidSP), Web of Science Core Collection, ASSIA (Proquest), Cinahl (EBSCOHost)

Cochrane Database of Systematic Reviews (Cochrane Library), Cochrane Central Register of

Controlled Trials (Cochrane Library) and Dissertations & Theses Global (Proquest). An

information specialist devised and tested the search strategy based on previous systematic

reviews (see Appendix 2 for an example of the search strategy) (24).

Study selection

Following two rounds of screening (title/abstract and full-text) by one reviewer (CP), articles

meeting inclusion criteria were classified as core (i.e. on group clinics primarily focusing on

16-25 year olds), highly relevant (e.g. on group education for 16-25 year olds or similar age

groups) and less relevant (e.g. group visits or education in very different age groups) – based

on their potential to contribute to programme theory. A 10% random sub-sample of papers

was reviewed by two additional reviewers with different expertise (GC, AH) to ensure

consistency.

As is standard in realist reviews, inclusion and exclusion criteria were refined as screening

progressed (20, 25). Studies published in English from 1999 were included if they focused on

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group-based care (in any setting) for young people (aged 16-25) with diabetes, other group-

based processes such as group education, and qualitative experiences of young patients living

with diabetes and transition to adult services. Studies were excluded when they described

one-to-one interventions or educational programmes without a component of group

interaction, when they referred to patient groups radically different to young adults (e.g.

much younger children or older adults), when they only discussed in-patient or home-based

education, when they had a very specific focus (e.g. exercise programmes or family

planning), or when they described low-resourced healthcare systems.

Data extraction and quality assessment

One reviewer (CP) read all articles included in full-text screening and conceptually coded

data relevant for programme theory development using the qualitative data management

software NVivo 11 (QSR International) until theoretical saturation was reached. A 10%

random sub-sample of coded articles was reviewed by a second reviewer (GC) for

consistency and disagreements were solved by discussion. Descriptive study characteristics

are presented in Appendix 3. At the point of inclusion based on relevance, the trustworthiness

and rigour of each study was assessed as appropriate for different study designs (20).

Data synthesis and analysis

Following conceptual coding, we applied a realist logic of analysis which meant iteratively

identifying sections of coded text and interpreting if they functioned as Contexts (C),

Mechanisms (M), Outcomes (O), or if they supported the configurations between them

(Context-Mechanism-Outcome Configurations or CMOCs). In doing this, we sought to

interpret and explain young adults’ reasoning and responses (i.e. mechanisms in a realist

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logic of analysis) to ‘resources’ becoming available through group clinics and to identify the

specific contexts where these mechanisms are more likely to be ‘triggered’. By moving

between data and programme theory, we were able to refine our explanations of why certain

patterns seemed to be occurring under specific contexts, related to group-based care. The

final programme theory consists of evidence-informed propositions, drawing on literature,

substantive theory and professional and patient expertise. Our synthesis was also informed by

substantive theory, mainly ecological theories of supported self-management and strong

structuration theory (26-28), critical perspectives on patient expertise and experiential

knowledge (29) and articulation work to denote the ‘hidden’, invisible adjustments and

alignments necessary to successfully carry out tasks in socio-cultural settings (30, 31).

Stakeholder input

Refinement of the programme theory was discussed repeatedly as part of a wider co-designed

research programme, with representation from people living with diabetes, health

professionals and wider stakeholders (e.g. policy makers).

Findings

Search results

The database search identified 1641 potentially relevant records. Two articles were removed

as duplicate entries. Title and abstract screening excluded 1366 records that did not fulfil the

inclusion criteria. Subsequent full-text screening resulted in 112 references, which were

further categorised according to their potential to contribute to programme theory

development (4 core papers, 35 of high relevance, 73 of low relevance – as explained in the

methods section). An additional 19 articles were added following recommendation from

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experts, targeted searches (e.g. on peer support) and citation tracking. A total of 131 papers

were reviewed for programme theory building and refinement. The flowchart diagram for the

study is presented in Figure 1.

[Figure 1 here]

Of the 131 articles, 32 used quantitative and 29 used qualitative methods, 12 employed mixed

methods, and there were also 2 books, 45 reviews, 6 position papers and 5 papers describing

frameworks or models of group-based care interventions. Distinct literature on group clinics

for young adults with diabetes was sparse, but studies of group-based structured education

and group clinics in a wider age group offered additional sources of data, along with work on

young people’s experiences living with the condition and on transitional care. Group clinics

were described differently: as group clinics, shared medical appointments, group medical

visits, cluster visits, and drop-in groups. Some papers describe group care for young people

that involved a clinical component (32-35), but in most cases group interactions were only

discussed as part of educational programmes (36-39), or as a component of larger

multifaceted interventions (40). Intervention studies provided little detail on how group-based

care was set-up and delivered within existing services.

Group clinics for young adults with diabetes – how, why, for whom and in what

circumstances?

The following sections present the synthesis of the literature across a number of areas, each

underpinned by one or more CMOCs explaining how and why group clinics may (or may

not) work for young people living with diabetes. The 8 CMOCs are described in Table 1 with

illustrative quotes supporting our interpretations. Selected supporting references can be found

in Appendix 1.

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[Table 1 here]

Sharing experiences

As a model of care that intends to bring patients together to engage in meaningful sharing and

interaction, group clinics play a symbolic role in recognising the significance of patient

expertise and supportive peer relationships. This shift towards care as a site for collective

action is generally well received by younger patients, who report high levels of satisfaction

(34, 35, 40). Sharing the experience of diabetes self-management between peers leads to

increased understanding and learning (CMOC1) (32, 34-36, 41, 42). Real personal

experiences help contextualise abstract medical advice which can lead to better self-

management (32, 42).

Young adults who feel isolated in or negative about their self-management, and with diabetes

distress may draw encouragement from peer support in group interactions, subsequently

leading to more confidence and motivation (CMOC2) (32, 36, 42, 43). This is often assumed

to result from role-modelling by patients who present themselves as more successful (43).

The literature commonly highlights empowerment as a way to explain how group clinics and

other peer interactions contribute to behaviour change (44). However, emphasis on individual

empowerment of behaviour change and self-management may neglect the social, professional

and cultural contexts in which patients are embedded.

Self-management as a social practice

Negotiating established norms in social settings with the need to effectively organise self-

management may require additional support and guidance. Group clinics are assumed to

provide a space for experimentation and reassurance – when a behaviour is normalised in the

group, it might become easier to perform it in public (45, 46). Group interactions also allow

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clinicians to acquire a sense of how young adults interact with their peers in the context of

self-management and to identify opportunities for supporting patients’ emotional and

motivational needs (43, 47). Especially for those experiencing their diagnosis and self-

management practices as stigmatising, peer support in group clinics may help instil a sense of

normalcy, which could lead to re-thinking self-monitoring and management in social settings

(CMOC3) (24, 25, 36, 41, 45, 46, 48, 49).

What counts as shared experience?

For group clinics to work, the literature suggests a need to instil a sense of connection and

affiliation between participants, and that this is most likely to develop when group

participants are invited on the basis of common characteristics or shared experiences so that

patients can relate to each other (CMOC4) (32, 50, 51). This is reinforced in a previous realist

review which suggests there is an ‘implied need for homogeneity within the group in order to

harness shared norms and values’ (25). What homogeneity means for young adults living

with diabetes is less clear. ‘Homophily’ – i.e. the degree to which people perceive others to

be similar to them – may be a more suitable concept to underpin an analysis of group

influence, as described in the diffusion of innvations theory (52).

Developmental stage, time since diagnosis, life stage (e.g. moving to university) or treatment

options (e.g. insulin pump therapy) are assumed to be important in allowing young adults to

interact more easily (51). There is, however, little data to show which of these characteristics

may actually make a difference in practice. Group homogeneity or homophily does not just

relate to creating a sense of affinity based on pre-existing characteristics, but also to ensuring

that topics of interest to all participants are discussed in the group (32).

Diffusion of innovations theory also highlights that ideas may flow less readily within a

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social system when there are too many similarities between people, therefore ‘heterophily’

also becomes important (52). In practice it may be difficult to match participants based on

background so building a sense of affinity will depend on how discussions are facilitated to

foreground commonalities and build on differences (6). Knowing patients well enough to be

able to understand how they might fit (or not) into a specific (albeit diverse) group and

fostering interactions in ways that not only focus on shared experiences but also help

reconcile contradictions may help young people feel affinity with others (53).

The role of relationships

Bringing people together in a way that allows connection and affinity to develop requires

significant skills and in-depth relational knowledge of patients and their circumstances. The

literature suggests that successful group clinics emerge from good pre-existing relationships

between patients and clinicians (53-55). Young adults feel they can trust their clinician, who

knows them well enough to suggest group clinics as a way to benefit their own individual

circumstances and to bring them together with other people who can share valuable expertise.

This relational introduction to group clinics could also counteract potential anxieties for

patients who may fear that group clinics are purely used a means to cut costs compared to

one-to-one care.

When young adults have a good relationship with their clinicians and perceive service

provision to be collaborative, helpful, respectful and characterised by mutual understanding,

it is more likely they will feel safe in exposing vulnerabilities and that they will perceive

added value and usefulness from their interactions with services providers. In turn, this may

may lead to increased engagement with the service and increased attendance (CMOC5) (53-

55).

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Provision of developmentally appropriate care

The literature further acknowledges that young adults are going through a life stage where

they are experimenting with their identities in-between childhood, adolescence and

adulthood, testing boundaries and keeping their options open (53, 55). Although necessary

for their development, this experimentation often ‘become[s] labelled as problematic [and]

problem saturated stereotypes of young people are allowed to dominate’ (48). Young adults

living with diabetes may have specific vulnerabilities in addition to their diabetes, including

experiencing eating disorders and mental health difficulties, a lack of supportive

relationships, and perceptions of low self-efficacy and control (55). In a healthcare system

that values consistency, attendance and adherence, adapting services for the needs of young

adults needs to be an ongoing and flexible process, and should recognise the physical,

cognitive, symbolic and socio-emotional work involved in self-management (49).

Service providers are commonly advised to deliver young adult care in an age- and

developmentally-appropriate manner, using a confidential and non-judgmental way manner

(56); ‘empathic, non-confrontational’ interventions and careful use of language (55); and

emphasising emotional and motivational needs (43, 47). Studies also recognise that young

adults may prioritise short-term gain over long-term implications and may respond more

positively when care extends beyond biomedical aspects of living with diabetes to include

young adults’ personal and professional priorities (53, 54, 56). In this way, young adults may

see added value in attending, which could in turn lead to increased engagement (48, 49, 53).

Group clinics have the potential to support this developmentally-appropriate care, creating a

safe space for discovering what it means to be living with diabetes, through one’s own

experiences and through the experiences and interpretations of others. Emphasis on positive

aspects of self-management, such as how it can help young adults achieve dietary freedom or

better manage their exercise regime, is also deemed important in building confidence, self-

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esteem and optimism (CMOC6) (57). Participation, however, needs to be treated as a

dynamic process and priorities need to be continuously reassessed and negotiated to

maximise the potential for continued engagement.

Engagement and sustainability

Existing literature indicates wide variability in group attendance, with interest dissipating as

patient needs and circumstances change (25, 32, 35, 45, 50, 58). Despite their benefits, group

clinics may not be sustainable if patients feel their individual needs are not fulfilled to the

extent needed and in a timely manner (58). According to the literature, it is often individual

attention as part of group-based care that leads to improvement and satisfaction. With time,

people who engage in group sessions, make continuous judgments about the added value of

these sessions to their own individual needs, which leads them to decide whether they will

keep engaging with the group (CMOC7) (25, 32, 35, 45, 58).

Therefore, group clinics need to ensure expectations are managed and individual needs are

adequately attended to, rather than focusing on a collective approach alone. This generates

questions about the potential for group clinics to replace individual appointments (25, 35, 45,

58). Although previous studies with adult diabetes groups report positive effects on clinical

and patient-reported outcomes, such improvements have not yet been identified in younger

groups (7, 8). Given the lack of long-term studies, it remains unclear whether engagement in

group clinics translates to improved glycaemic control or perceived quality of life for young

adults, especially for those transitioning to adult care (34, 45).

Other questions arise when considering group clinics for age groups <19 years; literature

suggests parents are active participants who attend the majority of group clinic appointments,

and whose presence increases discussion of significant diabetes-related topics (35). There are

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concerns, however, as to whether having parents in the group clinic may lead young patients

to take a more passive stance (33). Some interventions include separate parent-only groups to

allow ongoing parental involvement where needed, while still allowing space for young

adults to take ownership of their care and share openly with their peers (32, 48). A combined

approach may also help manage family relationships without detracting from the value of

group clinics as a peer-based model (48, 57).

Unintended consequences

Evidence on the potential of group clinics to support people to ask questions is contradicting:

some patients feel more comfortable contributing questions, while others are more reserved

in a group context (34, 35).Others have suggested peer support may negatively affect an

individual’s sense of self (48). Mismatch of expectations may lead young adults to feel they

cannot rely on their peers and may have negative consequences on group formation and

engagement.

Some studies suggest that young adults in most need (e.g. those with the highest HbA1c, low

self-esteem, or more signs of diabetes-related distress) are less likely to engage with diabetes

services, whether individual- or group-based (40, 54). For young adults who have negative

perceptions about their ability to self-manage or who face diabetes-related distress, fear they

may be diagnosed with complications or that they will be judged by fellow patients, may lead

to further disengagement (CMOC8) (40, 54).

Group clinics may also have other unintended consequences by normalising risky behaviours,

sharing negative experiences detrimental to diabetes care, or reacting adversely to advice

given by figures of authority. Managing these group dynamics is important to avoid negative

outcomes (59).

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Hidden implementation work and practical considerations

Running group-based care in healthcare services traditionally designed to deliver one-to-one

consultations is described as challenging. Established infrastructure and administrative

processes have to be adjusted to fit the new approach, while continuing to support

individualised care. This requires significant effort and introduces additional workload, which

some studies suggest balances out any time efficiencies gained through group-based care

(50). Despite best efforts to coordinate group clinics and ensure good group composition,

non-attendance, late cancellation and participation attrition are common and result in resource

waste (50).

Practical constraints to group-based clinics are widely reported, such as the lack of suitable

space to accommodate groups and need to use external facilities (42, 57). ‘Hidden’

operational work is necessary to ensure clinics are set up appropriately, with health

professionals briefed, content planned, and attendance confirmed, among other tasks (6).

‘Hidden’ clinical work is also required as clinicians will need to ‘triage’ for patients requiring

further individual attention in the context of the group interactions (25).

Delivery of group clinics require a wider skill set, different from that required when carrying

out individual clinical consultations. Groups need to be led by someone in a facilitator role

who can engage patients in discussion and manage group dynamics to allow experiences to

be shared, to ensure patient needs are met either as part of the clinic or individually; to

resolve any contradictions or disagreements with sensitivity; and to sustain a pleasant,

positive and safe learning environment (25, 36, 41, 42, 51). These skills expose additional

training needs that need to be fulfilled for staff to be able to deliver group clinics for young

adults (53, 55).

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Discussion

Summary of findings and comparison with previous literature

The 8 CMOCs described above synthesise a broad range of literature and allow us to explore

the mechanisms by which group clinics might meet the needs of young people living with

diabetes, the contexts in which this might work, and the circumstances in which this is likely

to add value over traditional care models. The following themes emerge when consolidating

and summarising the CMOCs:

1. Placing relationships at the core, without forgetting the individual

In line with other reviews on group-based care, we highlight the important role of therapeutic

relationships in the care of young adults with diabetes, not just between doctors and patients,

but also between peers (25). Whilst group clinics may seem to offer an opportunity to harness

these different therapeutic relationships, our review suggests that reality is more complex.

Peer support does not emerge automatically in group interactions, but occurs as a result of

carefully crafted interventions that take in account the need to draw on homophily and to

harness difference. In-depth knowledge of patients’ circumstances and good pre-existing

relationships with clinicians allow attention to socio-ecological aspects of coping with

diabetes, rather than focusing solely on self-management as an individual behaviour (28).

This means that emphasis on role modelling may be beneficial but can be sustained only

when the social aspects of self-management are not neglected (49).

Despite significant policy interest in group clinics as a replacement for one-to-one

consultations, our review reinforces that individual attention should be equally valued and

prioritised. Group clinics seem to work only on the basis of addressing individual patient

needs – either by bringing together groups homogeneous enough to be able to discuss issues

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of common interest or by addressing individual needs outside the group clinics. There is little

evidence to suggest that replacing individualised care with group clinics would lead to

positive experiences for young adults. Booth et al suggest that group clinics may be more

successful for specific period of times to fulfil clearly identified needs, rather than as a long-

term solution for patient care (25). More work is needed in this area to investigate the right

balance between one-to-one and group-based care specifically for young adults with diabetes.

2. Negotiating patient knowledge and identity

Beyond therapeutic relationships, group clinics become sites for collectively framing,

normalising or contesting the different types of biomedical and patient knowledge underlying

diabetes management (29, 60). Patients bring their own practical knowledge about how to

deal with aspects of their condition and debate their techniques with others who have devised

different ways of doing things and with clinicians who might be trying to reconcile

experiential aspects with core biomedical concepts. This process of ‘knowing together’

evolves as people compare their experiences and translate clinical knowledge, for example by

discussing the devices they use to support diabetes self-management (29). The group clinic

makes it easier to bring to focus competing priorities and to articulate ways for situating these

in the context of living with diabetes. Other studies have discussed this process by framing it

as ‘vicarious learning’ or ‘learning by doing’, but they have not adequately considered the

influence of the group on negotiating knowledge and patient identities (24, 25).

Many young adults will have recently arrived at a stage of independence in their diabetes

self-management. Instead of just sharing practical knowledge about the condition, group

clinics also act as a platform to collectively develop values and norms about what it means to

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attend adult diabetes care and being an adult diabetes patient. In the existing literature there is

more emphasis on group clinics modelling a notion of patients as empowered, in that they can

responsibly and proactively negotiate their care (and fulfil their individual needs) in the

context of a group interaction. This draws attention to specific dimensions of patient-hood

and may require careful management to ensure young adults are benefiting.

3. Hidden implementation work

Our review suggests that thinking about group clinics as the sum of multiple individual

consultations is misguided. Group clinics constitute a completely different way of organising

care and with this come different requirements for operational and administrative resources,

space for consultations, facilitation skills, documentation systems, as well as time investment

in getting to know patients and bringing them together in groups meaningfully. This includes

careful co-ordination between members of the multidisciplinary team and appropriate

individual management of patients who seem to require extra attention. Given the additional

work required, the role of group clinics in creating efficiencies in the health service requires

further research.

It is easy to underestimate the effort required in setting up and delivering good care through

group clinics, because it remains unarticulated and hidden. Temporal, material and integrative

aspects of articulation (31) are all present in research examining the feasibility of running

group clinics. However, few of these studies report on the interventions in enough depth to

allow full appreciation of the complexities involved in setting up and sustaining this new

model of care. There is need to better understand how wider cultural, professional and

material changes are required to establish group clinics as a mainstream model of care.

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Lessons learned

Group clinics have been studied across a range of conditions but have received less attention

in the context of diabetes care for young adults, despite the urgent need for better care models

to improve the poor health outcomes in this patient group. Drawing on a broad literature, this

review presents lessons learned towards tailoring group-based care interventions for the

specific needs and requirements of this age group.

Involvement in group clinics on the basis of good pre-existing relationships with health

professionals seems to be key in retaining young adults’ engagement with the service.

Carefully crafted therapeutic relationships between patients and health professionals are

based on flexibility, openness, non-judgmental language and understanding of developmental

goals and competing priorities. Group composition and facilitation relies on good knowledge

about patients – not just clinical information, but relational knowledge about their

personality, motivations and social context.

There are significant challenges to implementation and substantive invisible work is required

to establish successful group clinics for young adults. Resource implications, impact on pre-

existing processes, additional skills and infrastructure requirements would need to be

evaluated and costed. Iterative co-design of group-based care may help towards a clear value

statement for patients that would enhance the perceived usefulness of the model and would

lead to sustained engagement and sustainability.

Strengths and limitations

This review fulfils a clear and specific need in generating actionable evidence on how and

why group clinics may work for young adults living with diabetes. To do this we are drawing

our interpretations on a wider range of data than previous realist reviews, which looked

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across conditions or focused only on a small number of studies. Although this has

significantly expanded the evidence base feeding into this review, many of our interpretations

derive from literature on group-based education and would need to be examined further.

Under-reporting of the content and delivery of interventions in the published literature and

emphasis on clinical outcomes rather than psychosocial measures have also hindered a more

detailed analysis.

Further research

Better reporting of interventions and more long-term ethnographic studies would provide a

more detailed understanding of how and why group clinics work (or not) for young adults.

This realist review has already provided a foundation for the ongoing development and

evaluation of a new care model using group clinics for young adults with diabetes as part of a

larger programme of work undertaken in a multidisciplinary diabetes clinic in the UK.

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Acknowledgements

Author contributions: SF and DH conceptualised the study with input from MM, TG, AH,

SV and GC. CP led the design and conduct of the realist review, development of the

programme theory, and writing the manuscript. GC and AH acted as second reviewers, and

reviewed the manuscript. SF, TG, DH, MM and SV contributed to the interpretation of

findings and to writing the manuscript.

Statement of assistance: We would like to express our thanks to Nia Roberts, Geoff Wong

and Alexandra Christopher (University of Oxford) for methodological help. The paper has

greatly benefited from discussions with the steering group and participants in co-design

groups for the Together study.

Guarantor: SF is the guarantor for this study.

Funding: This work was funded by the UK National Institute for Health Research Health

Services and Delivery Research Programme (ref. 15/25/20). TG is part-funded by the

National Institute for Health Research Biomedical Research Centre, Oxford, UK (NIHR

BRC-1215-20008). CP is partly supported by an Academy of Medical Sciences Health of the

Public 2040 award, funded by the Wellcome Trust (HOP001\1049). The views and opinions

expressed therein are those of the authors and do not necessarily reflect those of the funders,

National Health Service or the Department of Health.

Ethics approval: The project has been approved by the Office for Research Ethics

Committees Northern Ireland (reference 17/NI/0019).

Conflict of interest statement: No competing interests to declare.

PROSPERO registration number: CRD42017058726

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References

1. International Diabetes Federation. Diabetes Atlas 2017 [Available from: http://www.diabetesatlas.org/. 2. Hex N, Bartlett C, Wright D, Taylor M, Varley D. Estimating the current and future costs of Type 1 and Type 2 diabetes in the UK, including direct health costs and indirect societal and productivity costs. Diabetic Medicine. 2012;29(7):855-62. 3. Anonymous. Editorial - Diabetes: mapping the titanic struggle ahead The Lancet Diabetes & Endocrinology. 2018;6(1):1. 4. Hayhoe B, Verma A, Kumar S. Shared medical appointments. BMJ. 2017;j4034. 5. Ramdas K, Darzi A. Adopting Innovations in Care Delivery-The Case of Shared Medical Appointments. The New England journal of medicine. 2017;376(12):1105-7. 6. Noffsinger EB. Running Group Visits in Your Practice. New York, NY: Springer; 2009. 7. Edelman D, McDuffie JR, Oddone E, Gierisch JM, Williams JW. Shared medical appointments for chronic medical conditions: a systematic review. VA-ESP Project #09-010. Durham, NC: Evidence-based Synthesis Program Center; 2012. 8. Housden L, Wong ST, Dawes M. Effectiveness of group medical visits for improving diabetes care: a systematic review and meta-analysis. CMAJ Canadian Medical Association Journal. 2013;185(13):E635-44. 9. Trento M, Passera P, Borgo E, Tomalino M, Bajardi M, Cavallo F, et al. A 5-Year Randomized Controlled Study of Learning, Problem Solving Ability, and Quality of Life Modifications in People With Type 2 Diabetes Managed by Group Care. Diabetes Care. 2004;27(3):670-5. 10. Trento M, Passera P, Tomalino M, Bajardi M, Pomero F, Allione A, et al. Group Visits Improve Metabolic Control in Type 2 Diabetes. A 2-year follow-up. 2001;24(6):995-1000. 11. Greenhalgh T, Campbell-Richards D, Vijayaraghavan S, Collard A, Malik F, Griffin M, et al. New models of self-management education for minority ethnic groups: pilot randomized trial of a story-sharing intervention. Journal of Health Services Research & Policy. 2011;16(1):28-36. 12. Greenhalgh T, Collard A, Begum N. Sharing stories: complex intervention for diabetes education in minority ethnic groups who do not speak English. Bmj. 2005;330(7492):628. 13. Mayer-Davis EJ, Lawrence JM, Dabelea D, Divers J, Isom S, Dolan L, et al. Incidence Trends of Type 1 and Type 2 Diabetes among Youths, 2002–2012. New England Journal of Medicine. 2017;376(15):1419-29. 14. Kossarova L, Cheung R, Hargreaves D, Keeble E. Admissions of inequality: emergency hospital use for children and young people. London: Nuffield Trust; 2017. 15. Constantino MI, Molyneaux L, Limacher-Gisler F, Al-Saeed A, Luo C, Wu T, et al. Long-Term Complications and Mortality in Young-Onset Diabetes: Type 2 diabetes is more hazardous and lethal than type 1 diabetes. Diabetes Care. 2013;36(12):3863-9. 16. Browne JL, Nefs G, Pouwer F, Speight J. Depression, anxiety and self-care behaviours of young adults with Type 2 diabetes: results from the International Diabetes Management and Impact for Long-term Empowerment and Success (MILES) Study. Diabetic Medicine. 2015;32(1):133-40. 17. Hynes L, Byrne M, Dinneen SF, McGuire BE, O'Donnell M, Mc Sharry J. Barriers and facilitators associated with attendance at hospital diabetes clinics among young adults (15–30 years) with type 1 diabetes mellitus: a systematic review. Pediatric Diabetes. 2016;17(7):509-18. 18. Hargreaves DS, Viner RM. Children's and young people's experience of the National Health Service in England: a review of national surveys 2001–2011. Archives of Disease in Childhood. 2012;97(7):661-6. 19. Hargreaves DS, Elliott MN, Viner RM, Richmond TK, Schuster MA. Unmet Health Care Need in US Adolescents and Adult Health Outcomes. Pediatrics. 2015;136(3):513-20. 20. Wong G, Greenhalgh T, Westhrop G, Pawson R. Development of methodological guidance, publication standards and training materials for realist and meta-narrative reviews: The RAMESES (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) project. Health Serv Deliv Res. 2014;2(30).

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21. Greenhalgh T, Thorne S, Malterud K. Time to challenge the spurious hierarchy of systematic over narrative reviews? European Journal of Clinical Investigation. 2018;48(6):e12931. 22. Papoutsi C, Hargreaves D, Colligan G, Hagell A, Patel A, Campbell-Richards D, et al. Group clinics for young adults with diabetes in an ethnically diverse, socioeconomically deprived setting (TOGETHER study): protocol for a realist review, co-design and mixed methods, participatory evaluation of a new care model. BMJ Open. 2017;7(6):e017363. 23. Papoutsi C, Mattick K, Pearson M, Brennan N, Briscoe S, Wong G. Social and professional influences on antimicrobial prescribing for doctors-in-training: a realist review. Journal of Antimicrobial Chemotherapy. 2017;72(9):2418-30. 24. Kirsh SR, Aron DC, Johnson KD, Santurri LE, Stevenson LD, Jones KR, et al. A realist review of shared medical appointments: How, for whom, and under what circumstances do they work? BMC Health Services Research. 2017;17(1):113. 25. Booth A, Cantrell A, Preston L, Chambers D, Goyder E. What is the evidence for the effectiveness, appropriateness and feasibility of group clinics for patients with chronic conditions? A systematic review. Health Services and Delivery Research. 2015;3(46). 26. Glass TA, McAtee MJ. Behavioral science at the crossroads in public health: extending horizons, envisioning the future. Social science & medicine. 2006;62(7):1650-71. 27. Stones R. Structuration theory. Basingstoke: Palgrave-Macmillan; 2005. 28. Greenhalgh T, Clinch M, Afsar N, Choudhury Y, Sudra R, Campbell-Richards D, et al. Socio-cultural influences on the behaviour of South Asian women with diabetes in pregnancy: qualitative study using a multi-level theoretical approach. BMC medicine. 2015;13(1):120. 29. Pols J. Knowing Patients. Science, Technology, & Human Values. 2013;39(1):73-97. 30. Strauss A. Work and the division of labor. The sociological quarterly. 1985;26(1):1-19. 31. Allen D. The Invisible Work of Nurses: Hospitals, Organisation and Healthcare. New York: Routledge; 2014. 32. Mejino A, Noordman J, van Dulmen S. Shared medical appointments for children and adolescents with type 1 diabetes: perspectives and experiences of patients, parents, and health care providers. Adolescent Health Medicine & Therapeutics. 2012;3:75-83. 33. Noordman J, van Dulmen S. Shared Medical Appointments marginally enhance interaction between patients: an observational study on children and adolescents with type 1 diabetes. Patient Education & Counseling. 2013;92(3):418-25. 34. Raymond JK, Shea JJ, Berget C, Cain C, Fay-Itzkowitz E, Gilmer L, et al. A novel approach to adolescents with type 1 diabetes: The team clinic model. Diabetes Spectrum. 2015;28(1):68-71. 35. Rijswijk C, Zantinge E, Seesing F, Raats I, van Dulmen S. Shared and individual medical appointments for children and adolescents with type 1 diabetes; differences in topics discussed? Patient Education & Counseling. 2010;79(3):351-5. 36. Lawton J, Rankin D. How do structured education programmes work? An ethnographic investigation of the dose adjustment for normal eating (DAFNE) programme for type 1 diabetes patients in the UK. Social Science & Medicine. 2010;71(3):486-93. 37. Lovell N. The 'SKIP' course: A programme for children and young people with diabetes. Journal of Diabetes Nursing. 2012;16(6):247-52. 38. Price K, Knowles J, Fox M, Wales J, Heller S, Eiser C, et al. Effectiveness of the Kids in Control of Food (KICk-OFF) structured education course for 11-16 year olds with Type 1 diabetes. Diabetic medicine : a journal of the British Diabetic Association [Internet]. 2016; 33(2):[192-203 pp.]. Available from: http://onlinelibrary.wiley.com/o/cochrane/clcentral/articles/592/CN-01133592/frame.html

http://onlinelibrary.wiley.com/store/10.1111/dme.12881/asset/dme12881.pdf?v=1&t=izef2wm4&s=423664531d3ba0a3ff801d987785715125e25cd1. 39. Beer R, Eiser C, Johnson B, Bottrell K, Whitehead V, Elliott J, et al. WICKED: The development and evaluation of a psycho-education programme for young people with type 1 diabetes. Journal of Diabetes Nursing. 2014;18(6):233-7. 40. Graue M, Wentzel-Larsen T, Hanestad BR, Sovik O. Evaluation of a programme of group visits and computer-assisted consultations in the treatment of adolescents with Type 1 diabetes. Diabetic Medicine. 2005;22(11):1522-9.

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41. Céspedes-Knadle YM, Munoz CE. Development of a group intervention for teens with type 1 diabetes. The Journal for Specialists in Group Work. 2011;36(4):278-95. 42. Wong ST, Browne A, Lavoie J, Macleod MLP, Chongo M, Ulrich C. Incorporating group medical visits into primary healthcare: Are there benefits? Healthcare Policy. 2015;11(2):27-42. 43. Newman D. School nurse-facilitated group meetings for adolescents with diabetes. NASN School Nurse. 2012;27(1):15-7. 44. Murphy K, Casey D, Dinneen S, Lawton J, Brown F. Participants' perceptions of the factors that influence diabetes self-management following a structured education (DAFNE) programme. Journal of Clinical Nursing. 2011;20(9-10):1282-92. 45. Løding RN, Wold JE, Skavhaug A, Graue M. Evaluation of peer-group support and problem-solving training in the treatment of adolescents with type 1 diabetes. European Diabetes Nursing. 2007;4(1):28-33. 46. Plante WA, Lobato DJ. Psychosocial group interventions for children and adolescents with type 1 diabetes: the state of the literature. Children's Health Care. 2008;37(2):93-111. 47. Robinson E. Being diagnosed with type 1 diabetes during adolescence. How do young people develop a healthy understanding of diabetes? Practical Diabetes. 2015;32(9):339-44a. 48. Dovey-Pearce G, Doherty Y, May C. The influence of diabetes upon adolescent and young adult development: a qualitative study. British Journal of Health Psychology. 2007;12(Pt 1):75-91. 49. Hinder S, Greenhalgh T. " This does my head in". Ethnographic study of self-management by people with diabetes. BMC Health Services Research. 2012;12(1):83. 50. Sawtell M, Jamieson L, Wiggins M, Smith F, Ingold A, Hargreaves K, et al. Implementing a structured education program for children with diabetes: lessons learnt from an integrated process evaluation. BMJ Open Diabetes Research & Care. 2015;3(1):e000065. 51. Day E. Group education for young people with diabetes. Journal of Diabetes Nursing. 2007;11(3):5p-p. 52. Rogers EM. Diffusion of innovations: Simon and Schuster; 2010. 53. Dovey�Pearce G, Hurrell R, May C, Walker C, Doherty Y. Young adults’(16–25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health & social care in the community. 2005;13(5):409-19. 54. Hynes L, Byrne M, Casey D, Dinneen SF, O'Hara MC. 'It makes a difference, coming here': A qualitative exploration of clinic attendance among young adults with type 1 diabetes. British Journal of Health Psychology. 2015;20(4):842-58. 55. Doherty Y, Dovey-Pearce G. Understanding the developmental and psychological needs of young people with diabetes. Implications for providing engaging and effective services. Practical Diabetes International. 2005;22(2):59-64. 56. Dovey-Pearce G. Improving care for young people: Ask them and they will tell you. Practical Diabetes. 2015;32(4):147. 57. Chaney D, Coates V, Shevlin M, Carson D, McDougall A, Long A. Diabetes education: what do adolescents want? Journal of Clinical Nursing. 2012;21(1-2):216-23. 58. Rankin D, Cooke DD, Elliott J, Heller SR, Lawton J, Group UNDS. Supporting self-management after attending a structured education programme: a qualitative longitudinal investigation of type 1 diabetes patients' experiences and views. BMC Public Health. 2012;12:652. 59. Wiggins M, Bonell C, Sawtell M, Austerberry H, Burchett H, Allen E, et al. Health outcomes of youth development programme in England: prospective matched comparison study. BMJ. 2009;339:b2534. 60. Greenhalgh T, Collard A, Campbell-Richards D, Vijayaraghavan S, Malik F, Morris J, et al. Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population. Journal of Health Services Research & Policy. 2011;16(1):37-43.

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Records identified in database search

(n=1641)

Records after duplicates removed (n=1639)

Title and abstract screening (n=1639)

Full-text screening (n=273)

Total articles included in synthesis (n=131) - Core (n=4) - High relevance (n=35) - Low relevance (n=72)

Records excluded (n=165) - Not relevant (n=92) - Abstracts only (n=48) - Dissertations (n=6) - Full text unavailable (n=19)

Records excluded (n=1366)

Records included through expert opinion and citation tracking (n=19)

Figure 1: Study flowchart

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CMOC 1: When young adults, who do not normally have the opportunity to share experiences with peers

living with diabetes, find a space to connect and share openly with others (C), this might make it more likely for

patients to feel supported (M) and comfortable (M), and could in turn lead to perceptions of increased

understanding and learning (O).

CMOC 2: When group interactions enable peer support, young adults who feel more isolated, experience

negative perceptions of self-management and/or face diabetes-related distress (C), may draw encouragement

from each other (M), which could subsequently lead to more confidence and motivation in their self-

management (O).

CMOC 3: Peer support in group clinics for young adults who experience their diagnosis and self-management

as socially stigmatising (C), may help instil a sense of normalcy (M), which could lead to re-thinking self-

monitoring and management in social settings (O).

CMOC 4: Where group clinic bring together participants who have common characteristics or shared

experiences (C), it is assumed that a sense of affinity is more likely to emerge between group members (M),

which could lead to increased sharing and sustained interest as participants will be able to relate to each other’s

experiences (O).

CMOC 5: In contexts where young adults have previously experienced a collaborative, helpful and respectful

relationship with their clinicians, characterised by mutual understanding (C), it is more likely they will feel safe

in exposing vulnerabilities (M) and that they will perceive added value and usefulness from interactions with

services providers who know them well (M), which may lead to increased engagement with the service (O) and

increased attendance (O).

CMOC 6: An increased emphasis on positive aspects of self-management and developmentally tailored

attention to sensitive emotional needs over other priorities, for young adults who remain ambivalent about their

role as diabetes patients (C), may help young adults slowly build self-esteem (M) and take a more active role in

their self-management (O).

CMOC 7: With time people who engage in group sessions (C), make continuous judgments about the added

value of these sessions to their own individual needs (M), which leads them to decide whether they will keep

engaging with the group (O).

CMOC 8: For young adults who have negative perceptions about their ability to self-manage or who face

diabetes-related distress (C), fear they may be diagnosed with further health problems (M), may lead them to

disengage from the service (O).

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Table 1: Context-Mechanism-Outcome Configurations (CMOCs).

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Study flowchart

123x137mm (72 x 72 DPI)

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Online-Only Supplemental Material

Appendix 1

Glossary

Contexts: settings, structures, environments, conditions or circumstances that trigger

behavioural and emotional responses (i.e. mechanisms) for those affected.

Mechanisms: the way in which individuals respond to and reason about the resources,

opportunities or challenges offered by a particular programme, intervention or process.

Mechanisms are triggered in specific contexts and lead to changes in behaviour.

Outcomes: impacts or behaviours resulting from the interaction between mechanisms and

contexts.

Context-Mechanism-Outcome Configurations (CMOCs): relationships between the building

blocks of realist analysis, i.e. how mechanisms are triggered under specific contexts to result

in particular outcomes.

Programme theory: a set of theoretical explanations or assumptions about how a particular

programme, process or intervention is expected to work.

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Appendix 2

Example search strategy

Date: 14 February 2017

Database: Ovid MEDLINE(R) Epub Ahead of Print, In-Process & Other Non-Indexed

Citations, Ovid MEDLINE(R) Daily and Ovid MEDLINE(R)

Interface: OvidSP

Coverage: 1946-present

Hits: 909

1 Young Adult/

2 Adolescent/

3 (adolescen* or teen* or young people or young men or young women or young male? or young female?

or young adult? or youth?).ti,ab.

4 1 or 2 or 3

5 exp Diabetes Mellitus/

6 diabet*.ti,ab.

7 5 or 6

8 *Group Processes/

9 Group Processes/ and "Appointments and Schedules"/

10 (group adj2 (visit* or clinic? or appointment? or care or meeting?)).ti,ab.

11 (gmv or gma).ti,ab.

12 ((shared or share or sharing) adj2 (appointment? or visit*)).ti,ab.

13 cluster visit*.ti,ab.

14 (group? adj2 (workshop? or class* or course? or train* or educat*)).ti,ab.

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15 exp Self Care/ and (health education/ or patient education as topic/)

16 exp Self Care/ and Group Processes/

17 ((self care or selfcare or self manag* or selfmanag* or self monitor* or selfmonitor*) adj5 (workshop?

or class* or course? or meeting? or train* or educat*)).ti,ab.

18 ("Dose Adjustment For Normal Eating" or dafne).ti,ab.

19 ("Diabetes education and self-management for ongoing and newly diagnosed" or desmond).ti,ab.

20 ("Beta Cell Education Resources for Training in Insulin and Eating" or bertie or streetwise or

lifewise).ti,ab.

21 x-pert.ti,ab.

22 (conversation map* or "journey for control").ti,ab.

23 (self care or selfcare or self manag* or selfmanag* or self monitor* or selfmonitor*).ti,ab.

24 ((group? adj2 (support or meeting)) or (peer? adj2 (support or group?))).ti,ab.

25 (education* adj3 (intervention? or program*)).ti,ab.

26 24 or 25

27 23 and 26

28 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 or 27

29 4 and 7 and 28

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4 A

ppen

dix

3

Tabl

e 2:

Des

crip

tive

stud

y ch

arac

teris

tics

A

rtic

le

Yea

r C

ount

ry

Type

of

pape

r

Aim

s/re

sear

ch q

uest

ions

St

udy

desc

ript

ion

and

met

hods

Sam

ple

1.

Abo

lfoto

u

h et

al(1

)

2011

Eg

ypt

Res

earc

h To

ass

ess q

ualit

y of

life

(QoL

) and

glyc

emic

con

trol i

n ad

oles

cent

s with

type

1 d

iabe

tes a

nd to

inve

stig

ate

the

impa

ct o

f an

educ

atio

nal p

rogr

am.

A q

uasi

expe

rimen

tal s

tudy

with

nonr

ando

miz

ed e

xper

imen

tal

and

cont

rol g

roup

s was

cond

ucte

d in

whi

ch a

tota

l of

503

adol

esce

nts w

ith ty

pe 1

diab

etes

com

plet

ed a

ques

tionn

aire

usi

ng th

e D

iabe

tes

Qua

lity

of L

ife In

stru

men

t for

You

th. A

dole

scen

ts w

ere

then

assi

gned

to e

xper

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tal a

nd

cont

rol g

roup

s. Th

e

expe

rimen

tal g

roup

was

subj

ecte

d to

four

120

-min

ute

sess

ions

of a

n ed

ucat

iona

l

prog

ram

ove

r a p

erio

d of

4

mon

ths.

The

sam

ple

incl

uded

503

ado

lesc

ents

, of

who

m 2

18 (4

3.3%

) wer

e m

ales

and

285

(56.

6%) w

ere

fem

ales

. Abo

ut h

alf o

f the

adol

esce

nts (

49.5

%) w

ere

early

adol

esce

nts (

ages

12

to le

ss th

an 1

4

year

s old

), 39

.6%

mid

-ado

lesc

ents

(age

s

14–1

6 ye

ars o

ld),

and

10.9

% la

te

adol

esce

nts (

ages

17

year

s or m

ore)

.

Ove

rall,

the

mea

n ag

e of

the

patie

nts

was

14.

63 ±

2.2

3 ye

ars.

Page

33

of 1

36

CON

FID

ENTI

AL-F

or P

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evie

w O

nly

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bete

s Car

e

Page 35: Promises and perils of group clinics for young adults living ...

5

2.

Abu

alul

a

et a

l(2)

2016

U

S Sy

stem

atic

revi

ew

To e

valu

ate

the

effe

ctiv

enes

s of

diab

etes

sel

f-m

anag

emen

t edu

catio

n

inte

rven

tions

with

a sk

ills d

evel

opm

ent

com

pone

nt o

n th

e qu

ality

of l

ife o

f

adol

esce

nts w

ith ty

pe 1

dia

bete

s.

Six

data

base

s wer

e

syst

emat

ical

ly se

arch

ed –

14

stud

ies p

ublis

hed

betw

een

1994

and

2014

met

the

incl

usio

n

crite

ria.

Stud

ies v

arie

d in

geo

grap

hy, p

ublic

atio

n

date

, fun

ding

, sam

ple

size

, and

QO

L

scal

e us

ed. T

he sa

mpl

e si

zes o

f the

stud

ies r

ange

d fr

om 1

9 to

503

adol

esce

nts,

and

ther

e w

ere

sim

ilar

prop

ortio

ns in

par

ticip

atio

n be

twee

n

mal

es a

nd fe

mal

es. I

nter

vent

ions

incl

uded

stru

ctur

ed a

nd u

nstru

ctur

ed

diab

etes

edu

catio

n pr

ogra

ms.

3.

Alb

ano

et

al(3

)

2008

Ita

ly

Syst

emat

ic

revi

ew

To id

entif

y th

e re

cent

cha

ract

eris

tics

and

the

deve

lopm

ents

of t

hera

peut

ic

educ

atio

n in

dia

bete

s.

Four

dat

abas

es w

ere

syst

emat

ical

ly se

arch

ed –

80

artic

les m

et th

e in

clus

ion

crite

ria.

39,6

24 p

atie

nts i

n to

tal (

rang

e fr

om 2

4

to 1

0,00

0 pa

tient

s) w

ith m

ajor

ity o

f

adul

t pat

ient

s (81

%) -

eld

erly

pat

ient

s

(6.7

%),

child

ren

(6.7

%) a

nd a

dole

scen

ts

(5%

) rep

rese

nt o

nly

a m

inor

ity o

f the

sam

ple.

4.

Altu

ndag

et a

l(4)

2016

Tu

rkey

R

esea

rch

To e

valu

ate

the

effe

cts o

f gro

up

inte

ract

ion

and

train

ing

in th

e

adap

tatio

n pr

oces

s to

dise

ase

in

adol

esce

nts w

ith ty

pe 1

dia

bete

s

mel

litus

(T1D

M).

Expe

rimen

tal s

tudy

with

pre

-

and

post

-test

con

trol g

roup

s in

the

pedi

atric

end

ocrin

e cl

inic

of

a un

iver

sity

hos

pita

l.

38 a

dole

scen

ts (s

tudy

gro

up n

=18,

cont

rol g

roup

n=2

0) w

ith T

1DM

betw

een

the

ages

of 1

2 an

d 14

yea

rs

Page

34

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evie

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nly

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s Car

e

Page 36: Promises and perils of group clinics for young adults living ...

6

5.

And

erso

n

et a

l.(5)

2003

U

S R

esea

rch

Th

is st

udy

pres

ents

a c

linic

al

pers

pect

ive

on th

e ch

alle

nge

of

impr

ovin

g di

abet

es e

duca

tion

and

care

durin

g th

e yo

ung

adul

t per

iod,

focu

ssin

g on

the

impo

rtanc

e of

the

deve

lopm

enta

l cha

nges

that

occ

ur

durin

g th

is tr

ansi

tiona

l pha

se o

f life

. It

pres

ents

dev

elop

men

tally

-bas

ed

prac

tice

prin

cipl

es fo

r the

you

ng a

dult

perio

d.

The

auth

ors t

ook

a

deve

lopm

enta

l per

spec

tive

on

youn

g ad

ulth

ood

to u

nder

stan

d

its im

pact

on

diab

etes

man

agem

ent a

nd e

ngag

emen

t in

ther

apy.

n/a

Page

35

of 1

36

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ENTI

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or P

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evie

w O

nly

Dia

bete

s Car

e

Page 37: Promises and perils of group clinics for young adults living ...

7

6.

Atta

ri et

al(6

)

2006

Ir

an

Res

earc

h To

inve

stig

ate

the

effe

ct o

f stre

ss

man

agem

ent t

rain

ing

on g

lyca

emic

cont

rol i

n pa

tient

s liv

ing

with

Typ

e 1

diab

etes

A q

uasi

exp

erim

enta

l stu

dy w

ith

nonr

ando

miz

ed e

xper

imen

tal

and

cont

rol g

roup

s was

cond

ucte

d in

whi

ch 6

0 pa

tient

s

com

plet

ed a

26

item

stre

ss

man

agem

ent q

uest

ionn

aire

.

HbA

1 le

vels

wer

e m

easu

red

sim

ulta

neou

sly

for a

ll

parti

cipa

nts b

efor

e th

e st

udy.

The

stud

y gr

oup

atte

nded

8, 2

hour

sess

ions

with

10-

15

parti

cipa

nts,

over

a 3

mon

th

perio

d on

stre

ss m

anag

emen

t.

The

clas

s for

mat

was

dis

cuss

ion

and

mut

ual t

alk,

und

er th

e

supe

rvis

ion

of a

psy

chia

trist

. At

the

end

of e

ach

sess

ion

ther

e

was

hom

ewor

k to

pre

pare

for

the

next

vis

it.

60 ty

pe 1

dia

betic

s (16

-30

year

s) w

ere

mat

ched

for a

ge a

nd se

x an

d di

vide

d in

to a

stud

y gr

oup

(n-=

30, m

ean

19.7

(3.2

9) [1

6-30

]) a

nd a

con

trol g

roup

(n=3

0, m

ean

20.8

(9.5

2 [1

6-30

]).

Page

36

of 1

36

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or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 38: Promises and perils of group clinics for young adults living ...

8

7.

Bee

r et

al(7

)

2014

U

K

Res

earc

h To

dev

elop

, tria

l and

eva

luat

e an

age

-

appr

opria

te se

lf-m

anag

emen

t

prog

ram

me

calle

d W

orki

ng w

ith

Insu

lin, C

arbs

, Ket

ones

and

Exe

rcis

e to

Man

age

Dia

bete

s (W

ICK

ED)

Phas

e 1:

Par

ticip

ants

atte

nded

a

one-

wee

k D

AFN

E co

urse

, and

wer

e of

fere

d fo

llow

-up

at si

x

wee

ks. A

focu

s gro

up w

ith th

e

parti

cipa

nts t

ook

plac

e at

the

end

of th

e co

urse

and

inte

rvie

ws

wer

e ca

rrie

d ou

t with

faci

litat

ors

both

bef

ore

and

afte

r the

cou

rse.

Phas

e 2:

Dev

elop

men

t of a

stru

ctur

ed e

duca

tion

cour

se

spec

ific

to th

e re

quire

men

ts o

f

youn

g pe

ople

with

dia

bete

s.

Phas

e 3:

Eva

luat

ion

of th

e ne

w

cour

se u

sing

writ

ten

acco

unts

from

par

ticip

ants

and

con

tent

anal

ysis

.

Phas

e 1:

Sev

en y

oung

peo

ple

aged

16–

21.

Phas

e 2

and

3: N

ine

youn

g pe

ople

age

d

16–2

1 ye

ars a

ttend

ed th

e on

e-w

eek

cour

se a

nd to

ok p

art i

n ev

alua

tion.

Page

37

of 1

36

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ENTI

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or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 39: Promises and perils of group clinics for young adults living ...

9

8.

Ble

akly

&

McK

ee(8

)

2010

N

orth

ern

Irel

and

Res

earc

h To

dis

cuss

the

deve

lopm

ent a

nd re

sults

of a

n ed

ucat

ion

prog

ram

me

for

adol

esce

nts w

ith ty

pe 1

dia

bete

s.

Focu

s gro

up to

incl

ude

adol

esce

nts i

n st

ruct

urin

g th

eir

own

educ

atio

n se

ssio

ns.

Four

2-h

our a

fter s

choo

l

sess

ions

at w

eekl

y in

terv

als i

n

the

loca

l lei

sure

cen

tre. T

he

sess

ions

invo

lved

a m

ixtu

re o

f

grou

p di

scus

sion

s, re

flect

ion,

and

prac

tical

app

licat

ion.

The

lear

ning

nee

ds o

f eac

h

indi

vidu

al w

ere

asse

ssed

thro

ugh

an in

itial

mul

tiple

choi

ce k

now

ledg

e qu

estio

nnai

re

adap

ted

by th

e di

abet

es te

am,

whi

ch in

clud

ed q

uest

ions

on

carb

ohyd

rate

food

s, in

sulin

actio

n an

d hy

pogl

ycae

mia

treat

men

t. A

n id

entic

al

ques

tionn

aire

at t

he e

nd o

f the

4

wee

ks p

rovi

ded

a to

ol to

ass

ess

know

ledg

e ga

ined

.

Eigh

t ado

lesc

ents

and

four

par

ents

atte

nded

and

rece

ived

info

rmat

ion

rega

rdin

g th

e pr

opos

ed c

onte

nt o

f the

educ

atio

n se

ssio

ns. O

f the

se a

dole

scen

ts

five

atte

nded

the

educ

atio

nal p

rogr

amm

e

on fo

ur c

onse

cutiv

e se

ssio

ns. T

he ta

rget

age

grou

p w

as 1

4- to

16-

year

olds

with

type

1 d

iabe

tes o

n m

ultip

le d

aily

inje

ctio

n (M

DI)

ther

apy

or w

ishi

ng to

com

men

ce M

DI t

hera

py.

Page

38

of 1

36

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ENTI

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or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 40: Promises and perils of group clinics for young adults living ...

10

9.

Boo

th e

t

al(9

)

2015

U

K

Syst

emat

ic

revi

ew

To e

xam

ine

evid

ence

for t

he u

se o

f

grou

p cl

inic

s in

patie

nts w

ith c

hron

ic

heal

th c

ondi

tions

.

Syst

emat

ic re

view

of e

vide

nce

from

rand

omis

ed c

ontro

lled

trial

s (R

CTs

) sup

plem

ente

d by

qual

itativ

e st

udie

s, co

st st

udie

s

and

UK

initi

ativ

es, i

nclu

ding

real

ist a

naly

sis.

MED

LIN

E, E

MB

ASE

, the

Coc

hran

e

Libr

ary,

Web

of S

cien

ce a

nd C

INA

HL,

1999

to 2

014.

Sys

tem

atic

revi

ews,

rand

omis

ed c

ontro

lled

trial

s, qu

alita

tive

stud

ies,

stud

ies r

epor

ting

cost

s and

evid

ence

spec

ific

to U

K se

tting

s wer

e

elig

ible

for i

nclu

sion

.

10.

Cah

ill e

t

al(1

0)

2016

U

S Sc

opin

g

revi

ew

To e

xplo

re th

e re

sear

ch li

tera

ture

on

self-

man

agem

ent i

nter

vent

ions

for

child

ren

and

yout

h w

ith d

iabe

tes.

The

auth

ors s

earc

hed

6

data

base

s – 1

1 st

udie

s met

the

incl

usio

n cr

iteria

.

The

maj

ority

of s

tudi

es fo

cuse

d on

child

ren

age

14-1

8 ye

ars a

nd p

rovi

ded

self-

man

agem

ent e

duca

tion,

self-

man

agem

ent s

uppo

rt, o

r bot

h.

11.

Cam

pbel

l

et a

l.(11

)

2016

U

K

Res

earc

h

To e

valu

ate

the

effe

ctiv

enes

s of

inte

rven

tions

des

igne

d to

impr

ove

the

trans

ition

of c

are

for a

dole

scen

ts fr

om

paed

iatri

c to

adu

lt he

alth

serv

ices

.

Coc

hran

e-st

yle

syst

emat

ic

revi

ew

Ado

lesc

ents

bet

wee

n 12

and

19

year

s

with

any

chr

onic

con

ditio

n re

quiri

ng

ongo

ing

clin

ical

car

e, w

ho

are

leav

ing

or tr

ansi

tioni

ng fr

om

paed

iatri

c to

adu

lt he

alth

care

serv

ice.

Page

39

of 1

36

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ENTI

AL-F

or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 41: Promises and perils of group clinics for young adults living ...

11

12.

Cas

ey e

t

al(1

2)

2011

Ir

elan

d R

esea

rch

To id

entif

y th

e ke

y fa

ctor

s im

pact

ing

on p

erso

ns w

ith T

ype

1 di

abet

es a

bilit

y

to a

ssim

ilate

the

Dos

e A

djus

tmen

t For

Nor

mal

Eat

ing

(DA

FNE)

DA

FNE

prin

cipl

es in

to th

eir d

aily

live

s and

how

thes

e fa

ctor

s cha

nge

over

tim

e.

Long

itudi

nal d

escr

iptiv

e

qual

itativ

e st

udy

Inte

rvie

ws w

ere

unde

rtake

n w

ith 4

0

parti

cipa

nts w

ho h

ad a

ttend

ed D

AFN

E

in o

ne o

f 5 st

udy

site

s acr

oss I

rela

nd, a

t

6 w

eeks

, 6 a

nd 1

2 m

onth

s afte

r

com

plet

ion

of th

e pr

ogra

mm

e. A

bout

one

quar

ter o

f par

ticip

ants

wer

e be

twee

n

20-3

0 ye

ars o

f age

.

13.

Cés

pede

s-

Kna

dle

et

al(1

3)

2011

U

SA

Res

earc

h To

des

crib

e th

e de

velo

pmen

t and

impl

emen

tatio

n of

“Te

en P

ower

” a

nove

l gro

up in

terv

entio

n fo

r dia

betic

teen

s and

thei

r car

egiv

ers,

desi

gned

to

impr

ove

med

ical

adh

eren

ce in

teen

s

with

T1

diab

etes

, usi

ng a

n in

form

atio

n-

mot

ivat

ion-

beha

viou

ral s

kills

mod

el.

2 gr

oups

in st

udy:

ado

lesc

ent

grou

p an

d ca

regi

ver g

roup

.

Gro

ups m

eet o

nce

wee

kly

(120

min

) for

10

cons

ecut

ive

wee

ks.

All

grou

p se

ssio

ns b

egin

with

30

min

utes

all

toge

ther

for

unst

ruct

ured

mea

ltim

e fo

llow

ed

by 9

0 m

inut

es in

sepa

rate

grou

ps fo

r pro

cess

- and

skill

s-

base

d ac

tiviti

es th

at ta

rget

diab

etes

-spe

cific

bar

riers

to

optim

al m

edic

al a

nd m

enta

l

heal

th o

utco

mes

.

Not

repo

rted.

Page

40

of 1

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ENTI

AL-F

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eer R

evie

w O

nly

Dia

bete

s Car

e

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12

14.

Cha

ney

et

al(1

4)

2012

N

orth

ern

Irel

and

Res

earc

h To

est

ablis

h ad

oles

cent

s’ b

elie

fs

rega

rdin

g th

e ne

ed fo

r stru

ctur

ed

diab

etes

edu

catio

n an

d th

eir v

iew

s on

how

such

a p

rogr

amm

e sh

ould

be

orga

nise

d an

d w

hat t

opic

s nee

d to

be

addr

esse

d.

Expl

orat

ory

qual

itativ

e st

udy

usin

g fiv

e fo

cus g

roup

inte

rvie

ws a

cros

s thr

ee h

ospi

tal

trust

s.

A to

tal o

f 21

adol

esce

nts b

etw

een

13–1

9

year

s wer

e in

terv

iew

ed.

15.

Chr

istie

et

al(1

5)

2016

U

K

Res

earc

h To

ass

ess t

he fe

asib

ility

and

eff

icac

y of

a cl

inic

-bas

ed st

ruct

ured

edu

catio

nal

grou

p pr

ogra

mm

e fo

r chi

ld a

nd

adol

esce

nt d

iabe

tes p

atie

nts.

Prag

mat

ic, c

lust

er-r

ando

miz

ed

cont

rolle

d tri

al to

ass

ess t

he

effic

acy

of a

clin

ic-b

ased

stru

ctur

ed e

duca

tiona

l gro

up

inco

rpor

atin

g m

otiv

atio

nal

inte

rvie

win

g (M

I) a

nd so

lutio

n-

focu

sed

brie

f the

rapy

(SF)

to

impr

ove

long

-term

gly

cem

ic

cont

rol,

qual

ity o

f life

and

psyc

hoso

cial

func

tioni

ng in

child

ren

and

adol

esce

nts w

ith

T1D

. A p

roce

ss e

valu

atio

n

colle

cted

dat

a fr

om k

ey

stak

ehol

der g

roup

s.

28 p

edia

tric

diab

etes

serv

ices

wer

e

rand

omiz

ed to

del

iver

the

inte

rven

tion

or

stan

dard

car

e. 3

62 c

hild

ren

(8–1

6 ye

ars)

with

HbA

1c≥8

.5%

wer

e re

crui

ted.

Nin

ety-

six

of th

e 18

0 yo

ung

peop

le

recr

uite

d to

the

inte

rven

tion

arm

(53%

)

atte

nded

at l

east

one

mod

ule.

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41

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13

16.

Chr

istie

et

al(1

6)

2014

U

K

Res

earc

h To

ass

ess t

he fe

asib

ility

of p

rovi

ding

a

clin

ic-b

ased

stru

ctur

ed e

duca

tiona

l

grou

p pr

ogra

mm

e in

corp

orat

ing

psyc

holo

gica

l app

roac

hes t

o im

prov

e

long

-term

gly

caem

ic c

ontro

l, Q

oL a

nd

psyc

hoso

cial

func

tioni

ng in

a d

iver

se

rang

e of

you

ng p

eopl

e.

Prag

mat

ic, c

lust

er ra

ndom

ised

cont

rol t

rial w

ith in

tegr

al

proc

ess a

nd e

cono

mic

eval

uatio

n. P

roce

ss e

valu

atio

n

usin

g qu

estio

nnai

res,

sem

istru

ctur

ed in

terv

iew

s,

info

rmal

dis

cuss

ion

follo

win

g

obse

rvat

ion

sess

ions

, fie

ldw

ork

note

s and

cas

e no

te re

view

.

Twen

ty-e

ight

pae

diat

ric d

iabe

tes

serv

ices

acr

oss L

ondo

n, so

uth-

east

Engl

and

and

the

Mid

land

s. Fo

rty-th

ree

heal

th-c

are

prac

titio

ners

(14

team

s) w

ere

train

ed in

the

inte

rven

tion.

The

stud

y

recr

uite

d 36

2 ch

ildre

n ag

ed 8

–16

year

s,

diag

nose

d w

ith T

1D fo

r > 1

2 m

onth

s,

with

a m

ean

12-m

onth

HbA

1c

leve

l of ≥

8.5

%.

17.

Cla

ncy

et

al(1

7)

2007

U

SA

Res

earc

h To

eva

luat

e pe

rcep

tions

of c

are

deliv

ered

thro

ugh

grou

p vi

sits

to

disa

dvan

tage

d pa

tient

s with

type

2

diab

etes

A ra

ndom

ised

con

trol t

rial

whe

re 1

86 p

atie

nts w

ith

unco

ntro

lled

type

2 d

iabe

tes

wer

e as

sign

ed to

rece

ive

care

in

grou

p vi

sits

or u

sual

car

e fo

r 12

mon

ths.

Perc

eptio

ns o

f car

e

rece

ived

wer

e m

easu

red

at

base

line,

6 m

onth

s and

12

mon

ths u

sing

the

Prim

ary

Car

e

Ass

essm

ent T

ool (

PCA

T), t

he

Dia

bete

s-Sp

ecifi

c Lo

cus o

f

Con

trol (

DLC

) sur

vey

and

the

Trus

t in

Phys

icia

n Sc

ale

(TPS

).

186

adul

t pat

ient

s with

a H

bA1c

leve

l of

≥ 8.

0% to

ok p

art.

Gro

up v

isit

atte

ndee

s

n=96

, usu

al c

are

atte

ndee

s n=9

0. M

ean

age

56.1

yea

rs (2

6.5-

80.7

).

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42

of 1

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14

18.

Cof

fen

&

Dah

lqui

st(

18)

2009

U

S Sy

stem

atic

revi

ew

To d

emon

stra

te th

e co

mpl

exity

of t

he

type

1 d

iabe

tes r

egim

en a

nd to

high

light

the

role

of t

he d

iabe

tes

educ

ator

s.

Thre

e da

taba

ses w

ere

sear

ched

for a

rticl

es a

bout

self-

man

agem

ent o

f typ

e 1

diab

etes

in y

oung

peo

ple.

Tas

k an

alys

is

to b

reak

dow

n th

e di

ffer

ent

activ

ities

invo

lved

in d

iabe

tes

man

agem

ent w

as c

ondu

cted

,

draw

ing

on re

leva

nt li

tera

ture

.

Littl

e in

form

atio

n is

pro

vide

d on

the

spec

ific

proc

esse

s fol

low

ed

in th

e re

view

.

The

pape

r foc

uses

on

child

ren

and

adol

esce

nts b

ut d

oes n

ot d

efin

e th

e

grou

p fu

rther

.

19.

Col

son

et

al(1

9)

2016

Fr

ance

Sy

stem

atic

revi

ew

To d

escr

ibe

the

cont

ent a

nd o

utco

mes

of st

ruct

ured

dia

bete

s edu

catio

n

prog

ram

mes

and

to a

sses

s com

patib

ility

with

reco

mm

enda

tions

of t

he

Inte

rnat

iona

l Soc

iety

for P

edia

tric

and

Ado

lesc

ent D

iabe

tes.

Inte

grat

ive

revi

ew b

ased

on

Coc

hran

e re

com

men

datio

ns.

Thirt

een

data

base

s wer

e

sear

ched

for e

valu

atio

ns o

f

educ

atio

n pr

ogra

ms (

2009

-

2014

) and

43

pape

rs m

et th

e

incl

usio

n cr

iteria

.

Educ

atio

nal p

rogr

amm

es fo

r you

ths w

ith

T1D

M <

18 y

ears

old

and

thei

r fam

ilies

.

Page

43

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s Car

e

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15

20.

Dav

idso

n

et a

l.(20

)

2004

U

S R

esea

rch

To d

escr

ibe

stre

ssor

s and

self-

care

chal

leng

es re

porte

d by

ado

lesc

ents

with

type

1 d

iabe

tes w

ho w

ere

unde

rgoi

ng in

itiat

ion

of in

tens

ive

man

agem

ent.

Con

tent

ana

lysi

s of c

opin

g sk

ills

train

ing

trans

crip

ts g

ener

ated

by

Gre

y an

d as

soci

ates

wer

e us

ed

to d

escr

ibe

adol

esce

nts’

pers

pect

ives

of s

tress

ors a

nd

self-

care

cha

lleng

es a

ssoc

iate

d

with

hav

ing

type

1 d

iabe

tes.

A c

onve

nien

ce sa

mpl

e of

six

teen

s (5

mal

es a

nd 1

fem

ale)

age

d 13

-17.

7 ye

ars

with

type

1 d

iabe

tes w

ere

draw

n fr

om a

wid

er st

udy,

“N

ursi

ng In

terv

entio

n to

Impl

emen

t DC

CT

Ther

apy

in Y

outh

(Gre

y et

al.,

199

8”

base

d on

the

avai

labi

lity

of tr

ansc

ripts

.

21.

Dav

is &

Vita

glia

no(

21)

2015

U

S

Posi

tion

pape

r/com

me

ntar

y

To in

trodu

ce th

e m

odel

of g

roup

vis

its

for a

dole

scen

ts w

ith ty

pe 1

dia

bete

s.

n/a

n/a

Page

44

of 1

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s Car

e

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16

22.

Dav

is et

al(2

2)

2008

U

SA

Res

earc

h R

evie

w o

f 9 p

aper

s on

“gro

up v

isits

in

diab

etes

” an

d ex

plor

atio

n of

ass

ocia

ted

prac

tical

issu

es.

Pilo

t stu

dy to

test

out

prac

tical

ities

of g

roup

vis

its fo

r

diab

etes

in a

Mid

wes

t aca

dem

ic

med

ical

cen

tre a

nd a

Wes

t Coa

st

fam

ily m

edic

ine

resi

denc

y. 2

orga

nisa

tiona

l mod

els:

a 9

0-

min

ute

nurs

e-pr

actit

ione

r led

grou

p vi

sit o

f six

to n

ine

patie

nts,

and

a se

cond

app

roac

h

usin

g a

prel

imin

ary

med

ical

assi

stan

t vis

it an

d th

ree

patie

nts

seen

toge

ther

by

a pr

imar

y ca

re

phys

icia

n in

an

hour

long

sess

ion.

Not

repo

rted

Page

45

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17

23.

Day

(23)

20

07

UK

R

evie

w a

nd

inte

rven

tion

desc

riptio

n

The

pape

r dis

cuss

es c

urre

nt g

roup

educ

atio

n pr

ogra

mm

es a

vaila

ble

to

youn

g pe

ople

with

dia

bete

s and

pres

ents

a n

ew in

terv

entio

n.

Phas

e 1:

The

edu

catio

n

prog

ram

me

was

des

igne

d fo

r

use

with

gro

ups o

f bet

wee

n tw

o

and

six

indi

vidu

als a

ged

13–1

8

year

s, w

ith th

e ol

dest

par

ticip

ant

to d

ate

bein

g 17

yea

rs. W

ithou

t

exce

ptio

n, y

oung

peo

ple

wer

e

chan

ging

from

a re

gim

en o

f

mix

ed in

sulin

giv

en tw

ice

a da

y

befo

re b

reak

fast

and

bef

ore

even

ing

mea

l to

MD

I.

Phas

e 2:

Gro

ups o

f up

to 2

0

youn

g pe

ople

with

type

1

diab

etes

age

d 11

yea

rs a

nd o

ver

wer

e in

vite

d to

atte

nd tw

o

form

al e

duca

tion

sess

ions

, the

first

hel

d du

ring

the

sum

mer

holid

ay b

efor

e th

ey c

hang

ed to

seni

or sc

hool

and

the

seco

nd

arou

nd 2

–3 m

onth

s afte

r the

y

had

chan

ged

scho

ol.

Phas

e 1:

The

upt

ake

of th

ese

sess

ions

was

app

roxi

mat

ely

98 %

, mai

nly

beca

use

the

youn

g pe

ople

had

alre

ady

requ

este

d th

e ch

ange

to th

e ne

w re

gim

en

and

wer

e th

eref

ore

high

ly m

otiv

ated

to

atte

nd th

e se

ssio

ns.

Phas

e 2:

Var

ious

atte

ndan

ce le

vels

hav

e

been

seen

from

30–

80%

.

[no

furth

er in

form

atio

n on

the

sam

ple

or

parti

cipa

nts p

rovi

ded]

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46

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s Car

e

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18

24.

Deb

aty

et

al(2

4)

2008

Fr

ance

R

esea

rch

To a

sses

s qua

lity

of li

fe in

adu

lt ty

pe 1

diab

etic

pat

ient

s for

one

yea

r fol

low

ing

a ho

spita

l edu

catio

nal p

rogr

amm

e

Pros

pect

ive

sing

le-c

entre

stud

y

usin

g th

e D

QO

L sc

ale,

sent

by

post

and

com

plet

ed

anon

ymou

sly

by th

e pa

tient

s

befo

re th

e st

art o

f the

prog

ram

me,

and

thre

e, si

x an

d

12 m

onth

s afte

rwar

ds.

77 p

atie

nts i

nclu

ded

– 46

men

(60%

)

and

31 w

omen

(40%

), w

ith a

mea

n ag

e

36.9

±13.

5 ye

ars

25.

DeC

oste

r

&

Cum

min

gs

(25)

2005

U

S R

evie

w o

f

inte

rven

tions

To d

emon

stra

te th

e po

tent

ial o

f clin

ical

soci

al w

orke

rs to

mee

t psy

chos

ocia

l

need

s of a

dults

with

type

2 d

iabe

tes.

Thre

e da

taba

ses w

ere

sear

ched

for a

rticl

es o

n ev

iden

ce-b

ased

inte

rven

tions

or p

rogr

ams

appr

opria

te fo

r clin

ical

soci

al

wor

k in

dia

bete

s. 27

pap

ers

wer

e in

clud

ed in

the

revi

ew.

27 e

vide

nce-

base

d in

terv

entio

ns o

r

prog

ram

s app

ropr

iate

for c

linic

al so

cial

wor

k. V

arie

ty o

f sam

ples

incl

uded

in

each

of t

he st

udie

s.

Page

47

of 1

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evie

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s Car

e

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19

26.

Di B

attis

ta

et a

l.(26

)

2009

U

S an

d

Can

ada

Res

earc

h

To e

xam

ine

the

asso

ciat

ion

betw

een

soci

al a

nxie

ty a

nd a

dher

ence

to d

iabe

tes s

elf-

care

and

qual

ity o

f life

and

to d

eter

min

e th

e

effe

cts o

f fea

r of

hypo

glyc

emia

on

thes

e as

soci

atio

ns in

adol

esce

nts w

ith

type

1 d

iabe

tes.

Que

stio

nnai

res w

ere

adm

inis

tere

d: S

ocia

l anx

iety

scal

e fo

r ado

lesc

ents

, the

diab

etes

qua

lity

of li

fe sc

ale,

and

the

sum

mar

y of

dia

bete

s

self-

care

act

iviti

es

ques

tionn

aire

, and

the

hypo

glyc

aem

ia fe

ar su

rvey

.

Pear

son

corr

elat

ions

wer

e

com

pute

d to

test

the

hypo

thes

is

that

soci

al a

nxie

ty w

ould

resu

lt

in d

ecre

ased

adh

eren

ce a

nd

diab

etes

rela

ted

qual

ity o

f life

and

mul

tiple

regr

essi

ons w

ere

perf

orm

ed to

exa

min

e th

e

rela

tions

hip

betw

een

soci

al

anxi

ety

and

adhe

renc

e

beha

viou

rs.

Boy

s and

girl

s wer

e

com

pare

d on

thei

r lev

el o

f soc

ial

anxi

ety.

Seve

nty-

six

adol

esce

nts (

33 b

oys,

43

girls

), be

twee

n 13

-18

year

s of a

ge (

mea

n ag

e 15

.9 (1

.44)

yea

rs),

with

type

1

diab

etes

recr

uite

d fr

om 2

ped

iatri

c

outp

atie

nt c

linic

s in

Tenn

esse

e an

d

Toro

nto.

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48

of 1

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s Car

e

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20

27.

Dic

kins

on

&

O’R

eilly

(2

7)

2004

U

S R

esea

rch

To g

ain

a be

tter

unde

rsta

ndin

g of

wha

t it m

eans

for

adol

esce

nt

fem

ales

to li

ve w

ith ty

pe 1

dia

bete

s

Van

Man

en’s

phe

nom

enol

ogic

al

fram

ewor

k w

as

used

to g

uide

the

proj

ect o

f

inqu

iry. U

nstru

ctur

ed, o

ne-o

n-

one

inte

rvie

ws w

ere

cond

ucte

d

and

parti

cipa

nts’

acc

ount

s wer

e

trans

crib

ed a

nd a

naly

zed

for

them

es

10 a

dole

scen

t

fem

ales

, age

d 16

and

17

year

s, w

ith ty

pe

1 di

abet

es re

crui

ted

from

a d

iabe

tes

cam

p.

Page

49

of 1

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21

28.

Doe

(28)

20

16

UK

R

esea

rch

To in

vest

igat

e ho

w th

e ty

pe o

f sup

port

prov

ided

by

peer

s may

mod

erat

e th

e

rela

tions

hips

bet

wee

n pe

er su

ppor

t and

diab

etes

out

com

es

A c

ross

-sec

tiona

l res

earc

h

desi

gn is

util

ised

. Par

ticip

ants

wer

e as

ked

to c

ompl

ete

a

ques

tionn

aire

bat

tery

whi

ch

incl

uded

the

Ber

lin S

ocia

l

Supp

ort S

cale

, the

Dia

bete

s

Soci

al S

uppo

rt Q

uest

ionn

aire

-

Frie

nds V

ersi

on, t

he S

elf-

Car

e

Inve

ntor

y –R

evis

ed.

A re

cent

mea

sure

of H

bA1c

was

als

o

take

n.

Line

ar re

gres

sion

s wer

e us

ed to

look

at t

he im

pact

of g

loba

l pee

r

supp

ort o

n se

lf-ca

re, g

lyca

emic

cont

rol,;

dia

bete

s spe

cific

supp

ort,

self-

care

and

gly

caem

ic

cont

rol.

Fina

lly, t

hose

with

hig

h

vers

us lo

w H

BA

1c w

ere

com

pare

d on

thei

r lev

els o

f

soci

al su

ppor

t.

90 p

artic

ipan

ts, a

ged

15–1

8 ye

ars a

nd

wer

e re

crui

ted

from

two

gene

ral

hosp

itals

in E

ngla

nd. T

here

wer

e 37

mal

es a

nd 5

3 fe

mal

es.

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50

of 1

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22

29.

Doh

erty

&

Dov

ey-

Pear

ce(2

9)

2005

U

K

Res

earc

h

(Rev

iew

(?) )

To p

rovi

de a

brie

f ove

rvie

w o

f rec

ent

rese

arch

into

the

impa

ct o

f dia

bete

s upo

n

adol

esce

nt d

evel

opm

ent a

nd th

e

spec

ific

psyc

holo

gica

l

diff

icul

ties a

ssoc

iate

d w

ith d

iabe

tes.

n/a

n/a

30.

Dov

ey-

Pear

ce e

t

al(3

0)

2005

U

K

Res

earc

h To

des

crib

e an

d un

ders

tand

the

cons

ider

ed o

pini

ons o

f 19

youn

g ad

ults

with

dia

bete

s who

wer

e re

ceiv

ing

seco

ndar

y ca

re se

rvic

es a

bout

the

prov

isio

n of

dia

bete

s ser

vice

s for

you

ng

peop

le.

Qua

litat

ive

user

invo

lvem

ent

stud

y us

ing

sem

i-stru

ctur

ed

inte

rvie

ws a

nd a

focu

s gro

up

with

serv

ice

user

s.

n =

19; m

ale

n =

8; fe

mal

e n

= 11

; age

rang

e =

16–

25 y

ears

; mea

n ag

e =

19.9

year

s; S

D ±

3.1

2 ye

ars

31.

Dov

ey-

Pear

ce e

t

al.(3

1)

2007

U

K

Res

earc

h Fi

rst,

to d

escr

ibe

and

unde

rsta

nd th

e

influ

ence

of d

iabe

tes u

pon

psyc

hoso

cial

deve

lopm

ent a

nd se

cond

, to

high

light

the

impl

icat

ions

for h

ealth

care

team

s.

Qua

litat

ive

sem

i-stru

ctur

ed

inte

rvie

ws w

ere

used

.

Peop

le a

ged

16–2

5 re

gist

ered

with

one

seco

ndar

y ca

re d

iabe

tes s

ervi

ce,

acro

ss tw

o di

stric

ts in

nor

th-e

ast

Engl

and

wer

e co

ntac

ted.

Nin

etee

n

inte

rvie

ws w

ere

cond

ucte

d an

d an

alys

ed u

sing

a

Fram

ewor

k A

ppro

ach.

32.

Dov

ey-

Pear

ce(3

2)

2015

U

K

Com

men

tary

To

con

tribu

te to

deb

ates

abo

ut

impr

ovin

g ca

re fo

r you

ng p

eopl

e.

n/a

n/a

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51

of 1

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23

33.

Due

-

Chr

isten

se

n et

al(3

3)

2011

D

enm

ark

Res

earc

h To

test

whe

ther

pat

ient

s with

Typ

e 1

diab

etes

wou

ld jo

in su

ppor

t gro

ups a

nd

bene

fit b

y im

prov

ing

psyc

hoso

cial

func

tioni

ng, r

egar

dles

s of t

heir

HbA

1c

leve

ls.

Con

curr

ent m

ixed

met

hods

stud

y.

Self-

repo

rted

psyc

hoso

cial

func

tioni

ng a

nd H

BA

1c w

ere

mea

sure

d at

the

begi

nnin

g an

d

end

of th

e su

ppor

t gro

up a

nd a

t

6- a

nd 1

2-m

onth

follo

w-u

p. A

t

the

last

sess

ion,

the

patie

nts

answ

ered

five

ope

n-en

ded

ques

tions

abo

ut th

eir p

erce

ptio

n

of th

e fo

rmat

and

out

com

e of

the

inte

rven

tion.

Afte

r eac

h

supp

ort g

roup

, a fo

cus g

roup

inte

rvie

w w

as c

ondu

cted

betw

een

1 w

eek

and

2 m

onth

s

afte

r the

last

sess

ion.

Con

veni

ence

sam

ple

n= 5

4 pa

tient

s (43

wom

en a

nd 1

1 m

en).

The

mea

n ag

e of

the

parti

cipa

nts w

as

43.8

(10.

5) y

ears

34.

Ede

lman

et a

l(34)

Syst

emat

ic

revi

ew

To su

mm

ariz

e th

e ef

fect

s of S

hare

d

Med

ical

App

oint

men

ts (S

MA

s) o

n

staf

f, pa

tient

, and

eco

nom

ic o

utco

mes

and

to e

valu

ate

whe

ther

the

impa

ct

varie

d by

clin

ical

con

ditio

n or

spec

ific

inte

rven

tion

com

pone

nts.

25 a

rticl

es w

ere

incl

uded

in th

e

revi

ew.

16 st

udie

s eva

luat

ed S

MA

inte

rven

tions

in p

atie

nts w

ith d

iabe

tes m

ellit

us a

nd 3

eval

uate

d SM

As i

n ol

der a

dults

with

high

util

izat

ion

of m

edic

al re

sour

ces.

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52

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24

35.

Elli

s et

al.(3

5)

2016

U

K

Syst

emat

ic

revi

ew

The

revi

ew a

ddre

ssed

the

follo

win

g

ques

tion:

‘Wha

t are

ado

lesc

ents

’ vie

ws

or e

xper

ienc

es o

f liv

ing

with

type

1

diab

etes

?’

Five

dat

abas

es se

arch

ed fo

r

rele

vant

arti

cles

bet

wee

n 20

04-

2014

, with

8 p

aper

s inc

lude

d in

the

revi

ew a

nd fi

ndin

gs

pres

ente

d in

nar

rativ

e fo

rm.

Ado

lesc

ents

with

dia

bete

s typ

e 1

aged

13-1

7 ye

ars,

alth

ough

som

e st

udie

s

incl

uded

par

ticip

ants

age

d 11

-18

year

s.

36.

Elw

yn e

t

al(3

6)

2001

U

K

Boo

k A

ims t

o pr

ovid

e a

prac

tical

gui

de to

smal

l gro

up w

ork

in o

rgan

isat

iona

l,

educ

atio

nal a

nd re

sear

ch se

tting

s.

n/a

n/a

37.

Ers

ig e

t

al.(3

7)

2015

U

S R

esea

rch

The

purp

ose

of th

is st

udy

was

to

iden

tify

stre

ssor

s of t

eens

with

Typ

e 1

diab

etes

(T1D

M) a

nd th

eir p

aren

ts

rela

ted

to th

e im

pend

ing

trans

ition

to

adul

thoo

d.

Qua

litat

ive

inte

rvie

win

g. O

pen

ende

d qu

estio

ns w

ere

aske

d to

iden

tify

ever

y da

y an

d ill

ness

-

rela

ted

stre

ssor

s am

ong

teen

ager

s with

Typ

e 1

diab

etes

and

thei

r par

ents

. Qua

litat

ive

desc

riptiv

e an

alys

is id

entif

ied

them

es in

inte

rvie

w tr

ansc

ripts

15 te

ens w

ith T

1DM

and

25

pare

nts s

een

in o

ne p

aedi

atric

dia

bete

s clin

ic.

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53

of 1

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25

38.

Fern

ande

s

et a

l.(38

)

2014

U

S R

esea

rch

To

det

erm

ine

patie

nts’

and

par

ents

perc

eptio

ns re

gard

ing

the

deliv

ery

of

trans

ition

edu

catio

n an

d pe

rcei

ved

barr

iers

to tr

ansf

er to

adu

lt or

ient

ed

care

.

Self-

repo

rt su

rvey

(30

mul

tiple

choi

ce a

nd o

ne fr

ee re

spon

se

ques

tion)

. Par

ent a

nd p

atie

nt

resp

onse

s wer

e co

mpa

red.

Con

tent

ana

lysi

s was

em

ploy

ed

for t

he fr

ee re

spon

se q

uest

ion.

155

16–2

5 ye

ars o

ld w

ith v

ario

us

child

hood

ons

et c

hron

ic d

isea

ses

(con

veni

ence

sam

ple)

and

thei

r

pare

nts/

guar

dian

s (10

4).

39.

Fitz

patr

ick

et a

l(39)

2013

U

S Sy

stem

atic

revi

ew

To e

xam

ine

the

publ

ishe

d lit

erat

ure

on

the

effe

ct o

f pro

blem

-sol

ving

inte

rven

tions

on

diab

etes

self-

man

agem

ent a

nd d

isea

se c

ontro

l.

Two

data

base

s wer

e se

arch

ed

and

the

auth

ors f

ollo

wed

cita

tions

from

refe

renc

e lis

ts.

Twen

ty-f

our s

tudi

es m

et

incl

usio

n cr

iteria

.

Adu

lt an

d ch

ildre

n po

pula

tions

,

incl

udin

g m

ultie

thni

c sa

mpl

es o

r

raci

al/e

thni

c m

inor

ities

Page

54

of 1

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e

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26

40.

Floy

d et

al(4

0)

2016

U

SA

Res

earc

h To

det

erm

ine

whe

ther

shar

ed m

edic

al

appo

intm

ents

(SM

As)

with

mul

ticom

pone

nt in

terv

entio

ns u

tilis

ing

mul

tidis

cipl

inar

y te

ams,

impr

ove

glyc

aem

ic c

ontro

l and

psy

chos

ocia

l

outc

omes

in p

oorly

con

trolle

d

adol

esce

nt ty

pe 1

dia

bete

s.

In th

is p

ilot s

tudy

, gro

ups o

f 3-6

subj

ects

and

thei

r fam

ilies

cam

e

toge

ther

to 3

SM

As a

nd 1

indi

vidu

al a

ppoi

ntm

ent e

very

3

mon

ths o

ver a

9 m

onth

per

iod.

Gro

up se

ssio

n co

nten

t was

guid

ed b

y pa

rtici

pant

s and

pee

r

supp

ort e

nabl

ed th

roug

h

disc

ussi

on. S

tatis

tical

ana

lysi

s

look

ed a

t QO

L, a

dher

ence

and

retro

spec

tive

and

pros

pect

ive

glyc

aem

ic c

ontro

l as o

utco

me

mea

sure

s.

37 su

bjec

ts e

nrol

led

and

32 c

ompl

eted

3

of 4

vis

its. S

ubje

cts w

ere

aged

bet

wee

n

12-1

6 (m

ean

13.7

± 1.

1)ye

ars w

ith ty

pe 1

diab

etes

for ≥

1 y

ear a

nd a

HbA

1c 0

f

7.5-

11%

Page

55

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27

41.

Fost

er e

t

al(4

1)

2007

U

K

Syst

emat

ic

revi

ew

To sy

stem

atic

ally

ass

ess t

he

effe

ctiv

enes

s of l

ay-le

d se

lf-

man

agem

ent p

rogr

amm

es fo

r peo

ple

with

chr

onic

con

ditio

ns.

Coc

hran

e re

view

. Eig

ht

data

base

s wer

e se

arch

ed fo

r

rand

omis

ed c

ontro

lled

trial

s

(RC

Ts) c

ompa

ring

stru

ctur

ed

lay-

led

self-

man

agem

ent

educ

atio

n pr

ogra

mm

es fo

r

chro

nic

cond

ition

s aga

inst

no

inte

rven

tion

or c

linic

ian-

led

prog

ram

mes

.

Seve

ntee

n tri

als i

nvol

ving

744

2

parti

cipa

nts.

The

inte

rven

tions

shar

ed

sim

ilar s

truct

ures

and

com

pone

nts b

ut

stud

ies s

how

ed h

eter

ogen

eity

in

cond

ition

s stu

died

, out

com

es c

olle

cted

and

effe

cts.

Ther

e w

ere

no st

udie

s of

child

ren

and

adol

esce

nts,

only

one

stud

y pr

ovid

ed d

ata

on o

utco

mes

beyo

nd si

x m

onth

s, an

d on

ly tw

o st

udie

s

repo

rted

clin

ical

out

com

es.

42.

Gag

e et

al(4

2)

2004

U

K

Syst

emat

ic

revi

ew

To c

ateg

oris

e pr

ogra

mm

es o

ffer

ed to

adol

esce

nts,

asse

ss th

eir o

utco

mes

and

cost

-eff

ectiv

enes

s and

iden

tify

area

s whe

re k

now

ledg

e is

lack

ing.

Nar

rativ

e re

view

of s

tudi

es o

n

educ

atio

nal a

nd p

sych

osoc

ial

prog

ram

mes

for a

dole

scen

ts

with

dia

bete

s. El

even

dat

abas

es

wer

e se

arch

ed a

nd 6

4 em

piric

al

pape

rs m

eetin

g th

e in

clus

ion

crite

ria w

ere

iden

tifie

d.

Prog

ram

mes

that

seek

to m

eet t

he

parti

cula

r nee

ds o

f ado

lesc

ents

. 58%

of

stud

ies h

ad fe

wer

than

40

parti

cipa

nts.

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56

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s Car

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28

43.

Gra

ue e

t

al(4

3)

2005

N

orw

ay

Res

earc

h To

exa

min

e th

e ef

fect

s of g

roup

vis

its

and

com

pute

r-as

sist

ed c

onsu

ltatio

ns o

n

qual

ity o

f life

and

gly

caem

ic c

ontro

l in

adol

esce

nts w

ith T

ype

1 di

abet

es.

The

inte

rven

tion

grou

p w

as

invi

ted

to a

15-

mon

th

prog

ram

me

com

pris

ing

grou

p

visi

ts a

nd c

ompu

ter-

assi

sted

cons

ulta

tions

. The

con

trol g

roup

was

off

ered

trad

ition

al o

ut-

patie

nt c

onsu

ltatio

ns. O

utco

mes

incl

uded

cha

nges

in H

bA 1

c an

d

the

adol

esce

nts’

ass

essm

ent o

f

gene

ric a

nd d

isea

se-s

peci

fic

heal

th-r

elat

ed q

ualit

y of

life

mea

sure

d by

the

Chi

ld H

ealth

Que

stio

nnai

re (C

H Q

-CF8

7) a

nd

the

Dia

bete

s Qua

lity

of L

ife

Que

stio

nnai

re (D

QO

L),

resp

ectiv

ely.

One

hun

dred

and

one

ado

lesc

ents

(55/

46) a

gree

d to

par

ticip

ate,

mea

n ag

e

14.2

yea

rs (S

D 1

.5),

mea

n di

abet

es

dura

tion

6.5

year

s (SD

3.6

, ran

ge 1

–16

year

s), m

ean

HbA

1c 9

.3%

(SD

1.4

,

rang

e 6.

1–12

.8%

).

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57

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29

44.

Gre

y et

al(4

4)

2009

U

S R

esea

rch

D

escr

ibes

the

deve

lopm

ent a

nd in

itial

eval

uatio

n of

a st

anda

rd d

iabe

tes

educ

atio

n pr

ogra

m fo

r you

th w

ith ty

pe

2 di

abet

es a

nd th

eir f

amili

es.

Part

of a

rand

omiz

ed p

aral

lel

grou

p cl

inic

al tr

ial d

esig

ned

to

eval

uate

the

rela

tive

effic

acy

of

3 tre

atm

ents

for t

ype

2 di

abet

es

in y

outh

age

10

to 1

8 ye

ars a

re

(1) m

etfo

rmin

alo

ne, (

2)

met

form

in p

lus r

osig

litaz

one,

and

(3) m

etfo

rmin

plu

s an

inte

nsiv

e lif

esty

le in

terv

entio

n

calle

d th

e TO

D2A

Y L

ifest

yle

Prog

ram

(TLP

).

218

parti

cipa

nts,

with

a m

ean

of 1

4.3

year

s of a

ge (±

2.1

year

s), a

nd 6

3%

fem

ale.

45.

Ha

Din

h et

al(4

5)

2016

A

ustra

lia

Syst

emat

ic

revi

ew

To re

view

the

evid

ence

on

usin

g th

e

teac

h-ba

ck m

etho

d in

hea

lth e

duca

tion

prog

ram

s for

impr

ovin

g ad

here

nce

and

self-

man

agem

ent o

f peo

ple

with

chro

nic

dise

ase.

Eigh

t dat

abas

es w

ere

sear

ched

and

12 p

aper

s inc

lude

d fo

r

anal

ysis

. Res

ults

are

pre

sent

ed

in n

arra

tive

form

.

Adu

lts a

ged

18 y

ears

and

ove

r with

one

or m

ore

than

one

chr

onic

dis

ease

.

46.

Ham

pson

et a

l(46)

2000

U

K

Syst

emat

ic

revi

ew

To e

valu

ate

the

effe

ctiv

enes

s of

beha

vior

al in

terv

entio

ns fo

r ado

lesc

ents

with

type

1 d

iabe

tes.

Elev

en e

lect

roni

c da

taba

ses

wer

e se

arch

ed fo

r eva

luat

ions

of

beha

viou

ral i

nter

vent

ions

.

Ado

lesc

ents

(age

rang

e 9–

21 y

ears

) with

type

1 d

iabe

tes

Page

58

of 1

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s Car

e

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30

47.

Ham

pson

et a

l(47)

2001

U

K

Syst

emat

ic

revi

ew (f

ull

HTA

repo

rt)

To e

xam

ine

the

effe

ctiv

enes

s of

beha

vior

al in

terv

entio

ns fo

r ado

lesc

ents

with

type

1 d

iabe

tes.

Elev

en e

lect

roni

c da

taba

ses

wer

e se

arch

ed. 6

4 re

ports

desc

ribin

g 62

stud

ies w

ere

iden

tifie

d as

mee

ting

the

incl

usio

n cr

iteria

. Eff

ect s

izes

wer

e ca

lcul

ated

for r

ando

mis

ed

cont

rolle

d tri

als.

Pre-

post

stud

ies w

ere

disc

usse

d in

narr

ativ

e fo

rm.

Ado

lesc

ents

(age

rang

e 9–

21 y

ears

) with

type

1 d

iabe

tes

48.

Hill

-

Bri

ggs(

48)

2003

U

S Sy

stem

atic

revi

ew

To re

view

the

liter

atur

e on

pro

blem

solv

ing

and

diab

etes

self-

man

agem

ent,

pres

ent s

elec

ted

psyc

holo

gica

l the

orie

s

of p

robl

em so

lvin

g an

d de

velo

p an

appl

ied

mod

el o

f pro

blem

solv

ing

in

chro

nic

illne

ss se

lf-m

anag

emen

t.

Two

data

base

s wer

e se

arch

ed

for s

tudi

es o

n pr

oble

m so

lvin

g

and

its re

latio

n w

ith d

isea

se se

lf-

man

agem

ent.

Elev

en p

aper

s

wer

e in

clud

ed in

the

revi

ew.

Var

iety

of s

ampl

es, i

nclu

ding

chi

ldre

n

and

adol

esce

nts.

49.

Hill

iard

et

al.(4

9)

2012

U

S R

evie

w a

nd

conc

eptu

al

deve

lopm

ent

The

auth

ors r

evie

w re

cent

conc

eptu

aliz

atio

ns o

f res

ilien

ce th

eory

in th

e co

ntex

t of t

ype

1 di

abet

es

man

agem

ent a

nd c

ontro

l and

pre

sent

a

theo

retic

al m

odel

of p

edia

tric

diab

etes

resi

lienc

e.

n/a

n/a

Page

59

of 1

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e

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31

50.

Hill

iard

et

al(5

0)

2016

U

S R

evie

w o

f

inte

rven

tions

The

pape

r sum

mar

izes

the

evid

ence

base

for e

stab

lishe

d di

abet

es sk

ills

train

ing

prog

ram

s, fa

mily

inte

rven

tions

,

and

mul

tisys

tem

ic in

terv

entio

ns, a

nd

intro

duce

s em

ergi

ng e

vide

nce

for

tech

nolo

gy a

nd m

obile

hea

lth

inte

rven

tions

and

hea

lth c

are

deliv

ery

syst

em in

terv

entio

ns.

Des

crip

tive

over

view

of

inte

rven

tions

Chi

ldre

n an

d ad

oles

cent

s with

Typ

e 1

diab

etes

(T1D

) and

Typ

e 2

diab

etes

(T2D

) and

thei

r fam

ilies

.

51.

Hin

der

&

Gre

enha

lg

h(51

)

2012

U

K

Res

earc

h To

pro

duce

a ri

cher

und

erst

andi

ng o

f

how

peo

ple

live

with

dia

bete

s and

why

self-

man

agem

ent i

s cha

lleng

ing

for

som

e.

Ethn

ogra

phic

stud

y

supp

lem

ente

d w

ith b

ackg

roun

d

docu

men

ts o

n so

cial

con

text

.

Parti

cipa

nts w

ere

shad

owed

at

hom

e an

d in

the

com

mun

ity fo

r

2-4

perio

ds o

f sev

eral

hou

rs

inte

rvie

wed

(som

etim

es w

ith a

fam

ily m

embe

r or c

arer

) abo

ut

thei

r sel

f-m

anag

emen

t eff

orts

and

supp

ort n

eeds

; and

take

n ou

t

for a

mea

l. D

etai

led

field

not

es

wer

e m

ade

and

anno

tate

d. D

ata

anal

ysis

was

info

rmed

by

stru

ctur

atio

n th

eory

.

30 p

eopl

e w

ith d

iabe

tes (

15 ty

pe 1

, 15

type

2),

aged

5-8

8, fr

om a

rang

e of

ethn

ic

and

soci

o-ec

onom

ic g

roup

s

Page

60

of 1

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32

52.

Hod

dino

tt

et a

l(52)

2010

U

K

Res

earc

h To

pro

pose

a fr

amew

ork

for t

he d

esig

n

and

proc

ess e

valu

atio

n of

hea

lth

impr

ovem

ent i

nter

vent

ions

occ

urrin

g in

a gr

oup

setti

ng to

ass

ist p

ract

ition

ers,

rese

arch

ers a

nd p

olic

y m

aker

s.

Bas

ed o

n te

am e

xper

ienc

es o

f

cond

uctin

g sy

stem

atic

revi

ews,

inte

rven

tion,

mix

ed m

etho

d an

d

ethn

ogra

phic

stud

ies o

f gro

ups

for b

reas

tfeed

ing

and

wei

ght

man

agem

ent a

nd a

lite

ratu

re

revi

ew, a

fram

ewor

k fo

r hea

lth

impr

ovem

ent g

roup

des

ign

and

deliv

ery

evol

ved.

The

fram

ewor

k w

as d

evel

oped

usi

ng

stud

ies t

he te

am h

ad b

een

invo

lved

in.

53.

Hou

sden

&

Won

g(53

)

2016

Syst

emat

ic

revi

ew

(upd

ate)

To id

entif

y as

soci

atio

n be

twee

n

deliv

ery

of g

roup

med

ical

vis

its

(GM

Vs)

and

phy

siol

ogic

, sel

f-ca

re a

nd

syst

em o

utco

mes

.

8 da

taba

ses w

ere

sear

ched

and

33 a

rticl

es w

ere

incl

uded

in th

e

revi

ew

Patie

nts a

ged

16–8

0 ye

ars w

ith ty

pe 1

or

2 di

abet

es.

54.

Hou

sden

et

al(5

4)

2013

Syst

emat

ic

revi

ew

To a

sses

s the

eff

ectiv

enes

s of g

roup

visi

ts fo

r pat

ient

s with

dia

bete

s.

Syst

emat

ic re

view

and

met

a-

anal

ysis

– 8

dat

abas

es w

ere

sear

ched

and

26

stud

ies w

ere

incl

uded

in th

e re

view

.

Patie

nts a

ged

16–8

0 ye

ars w

ith ty

pe 1

or

2 di

abet

es.

Page

61

of 1

36

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evie

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s Car

e

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33

55.

Hyn

es e

t

al.(5

5)

2015

Ir

elan

d R

esea

rch

To d

evel

op a

theo

ry e

xpla

inin

g

atte

ndan

ce o

f you

ng a

dults

at a

hosp

ital-b

ased

dia

bete

s clin

ic

Inte

rvie

ws c

ondu

cted

with

youn

g pe

ople

with

dia

bete

s and

thei

r ser

vice

pro

vide

rs.

Inte

rvie

ws w

ere

audi

o-re

cord

ed,

trans

crib

ed a

nd a

naly

sed

acco

rdin

g to

gro

unde

d th

eory

met

hodo

logy

.

You

ng a

dults

(21)

with

type

1 d

iabe

tes

and

serv

ice

prov

ider

s (8)

from

one

hosp

ital-b

ased

dia

bete

s clin

ic

56.

Hyn

es e

t

al(5

6)

2016

Ir

elan

d Sy

stem

atic

revi

ew

To sy

nthe

sise

find

ings

on

barr

iers

and

faci

litat

ors t

o cl

inic

atte

ndan

ce a

mon

g

youn

g ad

ults

(15–

30 y

ears

) with

type

1

diab

etes

.

Four

ele

ctro

nic

data

base

s wer

e

sear

ched

and

a to

tal 1

2 st

udie

s

met

the

incl

usio

n cr

iteria

.

Find

ings

are

pre

sent

ed in

the

form

of n

arra

tive

synt

hesi

s.

You

ng a

dults

(15–

30 y

ears

) with

type

1

diab

etes

mel

litus

.

Page

62

of 1

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s Car

e

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34

57.

Jabe

r et

al(5

7)

2006

U

SA

Res

earc

h Su

mm

ary

of c

urre

nt g

roup

vis

it

rese

arch

and

dev

elop

men

t of

sugg

estio

ns fo

r fur

ther

ing

this

car

e

mod

el.

Syst

emat

ic, e

lect

roni

c re

view

of

the

liter

atur

e, 1

974

– 20

04 v

ia

PubM

ed a

nd M

edlin

e da

taba

ses.

Furth

er a

rticl

es w

ere

obta

ined

by re

view

ing

bibl

iogr

aphi

es o

f

artic

les g

athe

red

thro

ugh

the

data

base

sear

ch. T

he q

ualit

ativ

e

revi

ew w

as o

rgan

ised

by

sequ

entia

lly d

escr

ibin

g th

e

effe

ct o

f all

revi

ewed

inte

rven

tions

on

each

of t

he

follo

win

g he

alth

out

com

es (i

f

mea

sure

d): p

atie

nt sa

tisfa

ctio

n,

heal

th se

rvic

es u

tiliz

atio

n,

qual

ity o

f car

e, h

ealth

beha

viou

rs, p

hysi

cal

func

tion

/dep

ress

ion

/qua

lity

of

life,

dis

ease

-spe

cific

out

com

es,

phys

icia

n sa

tisfa

ctio

n, a

nd c

ost

of c

are.

16 p

aper

s inc

ludi

ng p

rosp

ectiv

e

obse

rvat

iona

l

stud

ies a

nd ra

ndom

ized

con

trolle

d

clin

ical

trial

s.

Page

63

of 1

36

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ENTI

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or P

eer R

evie

w O

nly

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bete

s Car

e

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35

58.

Jabe

r et

al(5

8)

2006

U

SA

Res

earc

h To

des

crib

e cu

rren

t gro

up v

isit

mod

els

and

to d

iscu

ss th

e un

ique

adv

anta

ges

and

chal

leng

es g

roup

vis

its p

rese

nt fo

r

phys

icia

ns b

ased

on

four

-yea

r

expe

rienc

e.

Des

crip

tion

of lo

cally

dev

elop

ed

grou

p vi

sit p

rogr

ams f

or a

sthm

a,

oste

opor

osis

and

lipi

ds

man

agem

ent.

Cha

lleng

es

iden

tifie

d in

clud

ed: 1

) bill

ing

2)

wai

ting

time

and

patie

nt fl

ow 3

)

conf

iden

tialit

y 4)

dro

pout

rate

s.

≥ 24

0 pa

tient

s (m

ostly

fem

ale

in th

eir

mid

-50’

s)

Page

64

of 1

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evie

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s Car

e

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36

59.

Kee

rs J

et

al(5

9)

2004

Th

e

Net

herla

nd

s

Res

earc

h To

det

erm

ine

the

effe

ct o

f the

Mul

tidis

cipl

inar

y In

tens

ive

Educ

atio

n

Prog

ram

(MIE

P) o

n gl

ycae

mic

con

trol

and

qual

ity o

f life

and

gai

n in

sigh

t int

o

the

mec

hani

sms o

f eff

ect.

This

pilo

t stu

dy to

ok 5

1 pa

tient

s

thro

ugh

the

MIE

P ov

er 1

2 da

ys

with

gro

up se

ssio

ns a

nd

indi

vidu

al c

ouns

ellin

g

faci

litat

ed b

y th

e di

abet

es

educ

atio

n te

am.

Prim

ary

outc

ome

varia

bles

wer

e

glyc

aem

ic c

ontro

l (H

BA

1c) a

nd

qual

ity o

f life

mea

sure

d w

ith th

e

RA

BN

D-3

6 sc

ale.

The

Dia

bete

s

Sym

ptom

Che

cklis

t (D

SC)

mea

sure

d di

abet

es re

late

d

sym

ptom

s and

a D

utch

ver

sion

of th

e he

alth

locu

s of c

ontro

l

scal

e w

ere

used

alo

ng w

ith th

e

num

ber o

f sev

ere

hypo

glyc

aem

ic o

ccur

renc

es to

asse

ss se

cond

ary

outc

omes

. The

data

was

anl

ysis

ed u

sing

pai

red

T-te

sts a

nd re

gres

sion

ana

lysi

s.

58 p

atie

nts,

18-7

0 ye

ars (

mea

n 49

.10)

enro

lled

and

51 p

atie

nts c

ompl

eted

the

prog

ram

and

wer

e ev

alua

ted.

To

fit th

e

crite

ria H

BA

1c h

ad to

be>

7.5%

for a

t

leas

t a y

ear a

nd/o

r fre

quen

t or s

ever

e

hypo

glyc

aem

ia a

nd/o

r psy

chos

ocia

l

limita

tions

resu

lting

from

dia

bete

s.

Sele

ctio

n w

as b

ased

on

med

ical

repo

rts

and

an a

dmis

sion

inte

rvie

w

Page

65

of 1

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evie

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s Car

e

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37

60.

Kee

rs J

et

al(6

0)

2006

Th

e

Net

herla

nd

s

Res

earc

h Th

e st

udy

has 2

aim

s. 1)

to d

eter

min

e

the

effe

cts o

f the

Mul

tidis

cipl

inar

y

Inte

nsiv

e ed

ucat

ion

Prog

ram

(MIE

P) o

n

glyc

aem

ic c

ontro

l, H

r-Q

ol a

nd in

faci

litat

ors o

f em

pow

erm

ent (

i.e.

copi

ng a

nd a

ttrib

utio

n of

con

trol o

ver

diab

etes

), im

med

iate

ly a

fter t

he

inte

rven

tion

and

at a

1 y

ear f

ollo

w u

p.

2) to

det

erm

ine

whe

ther

inte

nded

incr

ease

s in

empo

wer

men

t are

rela

ted

to a

pos

itive

HB

A1c

and

Hr-

Qol

outc

omes

dire

ctly

afte

r MIE

P an

d at

1

year

follo

w u

p.

MIE

P w

as m

ade

up o

f 10

days

of g

roup

sess

ions

(6-9

patie

nts/

grou

p) a

nd so

me

indi

vidu

al su

ppor

t. Fo

llow

up

visi

ts ta

ke p

lace

at 6

wee

ks, 1

2

wee

ks a

nd 1

yea

r. Pa

rtici

pant

s

in th

e pr

ogra

m c

ompl

eted

a

base

line

asse

ssm

ent a

nd h

ad

thei

r firs

t mea

sure

men

ts ta

ken

follo

win

g a

succ

essf

ul

adm

issi

on in

terv

iew

. Fol

low

up

ques

tionn

aire

s wer

e m

aile

d to

parti

cipa

nts a

t 3m

onth

s and

1

year

. The

dat

a w

as a

nlys

ised

usin

g in

depe

nden

t T-te

sts a

nd

regr

essi

on a

naly

sis.

99 p

atie

nts c

ompl

eted

MIE

P an

d 23

1

non-

refe

rred

out

patie

nts c

onse

nted

to

prov

ide

refe

renc

e va

lues

.

Page

66

of 1

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s Car

e

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38

61.

Keo

ugh

et

al.(6

1)

2011

U

S R

esea

rch

Th

e pu

rpos

e of

this

stud

y w

as to

exam

ine

diff

eren

ces i

n se

lf-

man

agem

ent b

ehav

iors

(Col

labo

ratio

n

with

Par

ents

,Dia

bete

s Car

e A

ctiv

ities

,

Dia

bete

s Pro

blem

Sol

ving

, Dia

bete

s

Com

mun

icat

ion,

and

Goa

ls) b

etw

een

early

, mid

dle,

and

late

ado

lesc

ence

. The

role

of r

egim

en a

nd g

ende

r as

cova

riate

s in

self-

man

agem

ent

beha

vior

s was

als

o ex

amin

ed.

Seco

ndar

y an

alys

is o

n

dem

ogra

phic

, illn

ess-

rela

ted

and

self-

man

agem

ent v

aria

bles

, with

a cr

oss-

sect

iona

l des

crip

tive

surv

ey d

esig

n.

Parti

cipa

nts w

ere

anal

ysed

to

dete

rmin

e se

lf-m

anag

emen

t

beha

viou

rs in

the

early

, mid

dle

and

late

ado

lesc

ence

.

Una

djus

ted

diff

eren

ces b

y st

age

of a

dole

scen

ce in

self-

man

agem

ent b

ehav

iour

s wer

e

estim

ated

usi

ng A

NO

VA

.

504

parti

cipa

nts a

ged

13-2

1 ye

ars f

rom

the

Self-

Man

agem

ent o

f Dia

bete

s-

Ado

lesc

ent i

nstru

men

t dev

elop

men

t

stud

y, w

ho h

ad b

een

diag

nose

d w

ith

Type

1 d

iabe

tes f

or a

t lea

st a

yea

r, w

ere

not p

regn

ant a

nd h

ad n

o

cond

ition

/chr

onic

illn

ess t

hat c

ould

affe

ct h

ow th

e in

divi

dual

car

ed fo

r

his/

her d

iabe

tes.

Page

67

of 1

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39

62.

Kic

hler

et

al(6

2)

2013

U

S R

esea

rch

To im

plem

ent t

he K

icki

ng in

Dia

bete

s

Supp

ort P

roje

ct in

terv

entio

n to

dete

rmin

e th

e im

pact

of t

his t

reat

men

t

on im

prov

ing

psyc

hoso

cial

adj

ustm

ent

and

diab

etes

man

agem

ent a

mon

g

adol

esce

nts w

ith T

1DM

and

thei

r

pare

nts.

Com

bine

d pe

er- a

nd fa

mily

-

base

d gr

oup

ther

apie

s usi

ng a

wai

t lis

t con

trol d

esig

n

met

hodo

logy

. Gen

eral

psyc

hoso

cial

and

dia

bete

s-

rela

ted

varia

bles

wer

e as

sess

ed

at b

asel

ine,

imm

edia

tely

post

treat

men

t, an

d 4

mon

ths

post

treat

men

t.

30 a

dole

scen

ts w

ith T

1DM

for a

t lea

st 6

mon

ths b

etw

een

13 a

nd 1

7 ye

ars o

f age

,

who

wer

e pa

tient

s of a

dia

bete

s clin

ic in

a la

rge,

mid

wes

tern

hos

pita

l and

thei

r

pare

nts.

Mea

n ag

e at

stud

y pa

rtici

patio

n

was

15.

17 y

ears

(SD

= 1

.34

year

s).

Fifty

-thre

e pe

rcen

t of t

he a

dole

scen

ts

wer

e gi

rls.

63.

Kim

e et

al.(6

3)

2013

U

K

Res

earc

h

To d

evel

op a

self-

care

inte

rven

tion

prog

ram

me

with

the

invo

lvem

ent o

f

youn

g pe

ople

with

type

1 d

iabe

tes o

r

asth

ma.

Focu

s gro

up st

udy.

87

you

ng p

eopl

e, a

ged

12–1

7, a

nd se

ven

youn

g ad

ult f

acili

tato

rs, a

ged

18–2

5,

with

type

1 d

iabe

tes o

r ast

hma.

64.

Kir

k et

al(6

4)

2013

U

K

Syst

emat

ic

revi

ew

To re

view

rese

arch

on

the

effe

ctiv

enes

s

of se

lf-ca

re su

ppor

t int

erve

ntio

ns fo

r

child

ren

and

youn

g pe

ople

with

ast

hma,

cyst

ic fi

bros

is a

nd d

iabe

tes.

Seve

ntee

n el

ectro

nic

data

base

s

wer

e se

arch

ed a

nd 1

5 pa

pers

met

the

incl

usio

n cr

iteria

. The

resu

lts w

ere

narr

ativ

ely

synt

hesi

zed.

Chi

ldre

n an

d yo

ung

peop

le a

ged

0–16

year

s dia

gnos

ed w

ith o

ne o

f the

follo

win

g lo

ng-te

rm c

ondi

tions

:

asth

ma,

cys

tic fi

bros

is a

nd d

iabe

tes.

Page

68

of 1

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40

65.

Kir

sh e

t

al(6

5)

2017

U

SA

Res

earc

h To

bui

ld u

pon

exis

ting

evid

ence

bas

e,

whi

ch su

gges

ts th

at sh

ared

med

ical

appo

intm

ents

(SM

A’s

) are

eff

ectiv

e

and

expl

ore

how

they

are

eff

ectiv

e in

term

s of t

he u

nder

lyin

g m

echa

nism

s of

actio

n an

d un

der w

hat c

ircum

stan

ces.

Rea

list R

evie

w m

etho

dolo

gy

was

cho

sen

to u

ncov

er h

ow a

nd

for w

hom

and

und

er w

hat

circ

umst

ance

s SM

As w

ork

and

to sy

nthe

size

the

liter

atur

e on

SMA

s, w

hich

incl

uded

a b

road

sear

ch o

f 800

+ pu

blis

hed

artic

les.

Nin

e m

ain

mec

hani

sms

that

serv

e to

exp

lain

how

SM

As

wor

k w

ere

theo

rized

from

the

data

imm

ersi

on

proc

ess a

nd c

onfig

ured

in a

serie

s of c

onte

xt-m

echa

nism

-

outc

ome

conf

igur

atio

ns

(CM

Os)

.

71 h

igh

qual

ity p

rimar

y re

sear

ch a

rticl

es

wer

e id

entif

ied

to b

uild

a c

once

ptua

l

mod

el o

f SM

As.

20 o

f tho

se w

ere

sele

cted

for a

n in

dep

th a

naly

sis u

sing

real

ist m

etho

dolo

gy.

66.

Lav

oie

et

al(6

6)

2013

C

anad

a ??

R

esea

rch

To e

xplo

re d

imen

sion

s ide

ntifi

ed a

s key

in th

e pa

tient

-cen

tred

liter

atur

e in

the

cont

ext o

f prim

ary

heal

th c

are

serv

ices

deliv

ered

in a

gro

up se

tting

.

Rep

ort o

f qua

litat

ive

stud

y

nest

ed in

larg

er m

ixed

met

hods

stud

y of

gro

up m

edic

al v

isits

(GM

V’s

). K

ey fo

rmat

and

proc

ess-

orie

nted

ele

men

ts

iden

tifie

d in

GM

Vs,

and

on th

eir

link

to im

prov

ed o

utco

mes

are

pres

ente

d.

63 p

artic

ipan

ts c

ompl

eted

in-d

epth

inte

rvie

ws,

(pro

vide

rs n

=34,

pat

ient

s

n=29

)

Page

69

of 1

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41

67.

Law

ton

&

Ran

kin(

67

)

2010

U

K

Res

earc

h To

und

erst

and

how

and

why

stru

ctur

ed

educ

atio

n pr

ogra

mm

es w

ork

for

patie

nts w

ith d

iabe

tes a

nd o

ther

chr

onic

dise

ases

.

Six

five-

day

DA

FNE

cour

ses

wer

e ob

serv

ed in

five

cen

tres

acro

ss th

e U

K a

nd in

-dep

th

inte

rvie

ws c

ondu

cted

30 p

atie

nts a

ged

18-5

9 ye

ars w

ere

inte

rvie

wed

68.

Lee

lara

thn

a et

al(6

8)

2011

U

K

Syst

emat

ic

revi

ew

To a

nsw

er th

e fo

llow

ing

ques

tions

:

Wha

t are

the

effe

cts o

f int

ensi

ve

treat

men

t pro

gram

mes

, psy

chol

ogic

al

inte

rven

tions

, and

edu

catio

nal

inte

rven

tions

in a

dults

and

ado

lesc

ents

with

type

1 d

iabe

tes?

Wha

t are

the

effe

cts o

f diff

eren

t ins

ulin

regi

men

s or

freq

uenc

y of

blo

od g

luco

se m

onito

ring

in a

dults

and

ado

lesc

ents

with

type

1

diab

etes

?

At l

east

3 d

atab

ases

wer

e

sear

ched

and

42

syst

emat

ic

revi

ews,

RC

Ts, o

r obs

erva

tiona

l

stud

ies m

et in

clus

ion

crite

ria.

Adu

lts a

nd a

dole

scen

ts w

ith ty

pe 1

diab

etes

69.

Lir

ussi

(69)

20

10

Italy

Sy

stem

atic

revi

ew

To e

valu

ate

the

effe

ctiv

enes

s of

inte

rven

tions

to im

prov

e gl

ycae

mic

cont

rol i

n et

hnic

min

ority

gro

ups.

Four

dat

abas

es w

ere

sear

ched

,

alon

g w

ith a

dditi

onal

surv

ey

data

sets

.

Ethn

ic m

inor

ity g

roup

s liv

ing

in

high

-inco

me

coun

tries

, as c

ompa

red

with

peo

ple

with

type

2 d

iabe

tes i

n th

e

gene

ral p

opul

atio

n.

Page

70

of 1

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42

70.

Lød

ing

et

al(7

0)

2007

N

orw

ay

Res

earc

h To

des

crib

e th

e el

emen

ts a

nd re

sults

of

peer

-gro

up su

ppor

t and

pro

blem

-

solv

ing

train

ing

in th

e tre

atm

ent o

f

adol

esce

nts w

ith ty

pe 1

dia

bete

s and

thei

r par

ents

.

Prel

imin

ary

inte

rvie

ws,

self-

repo

rt qu

estio

nnai

res a

nd

med

ical

reco

rd re

view

for

HbA

1c v

alue

s

A to

tal o

f 19

adol

esce

nts w

ith ty

pe 1

diab

etes

(13–

17 y

ears

of a

ge) a

nd th

eir

pare

nts p

artic

ipat

ed in

the

inte

rven

tion.

71.

Lov

ell(7

1)

2012

U

K

Res

earc

h To

des

crib

e th

e de

velo

pmen

t of a

n

educ

atio

nal p

rogr

amm

e fo

r chi

ldre

n

and

youn

g pe

ople

with

dia

bete

s – th

e

“SK

IP”

cour

se –

and

to p

rese

nt fi

ndin

gs

from

feed

back

by

parti

cipa

nts.

The

“SK

IP”

cour

se w

as in

itial

ly

trial

led

in tw

o se

ssio

ns. Y

oung

peop

le a

nd p

aren

ts g

ave

writ

ten

com

men

ts in

an

anon

ymou

s

feed

back

form

. PD

SNs a

nd

diet

itian

s gav

e th

eir r

efle

ctio

ns

and

view

s at a

team

mee

ting.

Follo

win

g th

e tri

al, 4

SK

IP

sess

ions

hav

e be

en o

rgan

ised

(with

20

parti

cipa

nts i

n to

tal).

All

child

ren

and

youn

g pe

ople

who

wer

e

new

ly d

iagn

osed

with

dia

bete

s (ag

ed 1

4

mon

ths t

o 15

yea

rs),

thei

r par

ents

or

care

rs a

nd si

blin

gs w

ere

cons

ider

ed fo

r

invi

tatio

n. [n

o ot

her i

nfor

mat

ion

prov

ided

]

Page

71

of 1

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s Car

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43

72.

Lyo

ns e

t

al.(7

2)

2013

U

S R

evie

w

The

revi

ew id

entif

ies b

arrie

rs to

succ

essf

ul tr

ansi

tion

and

prov

ides

a

chec

klis

t for

stre

amlin

ing

the

proc

ess.

Rev

iew

of a

rticl

es re

late

d to

trans

ition

to a

dult

diab

etes

car

e

and

phys

ical

and

psy

chos

ocia

l

asse

ssm

ent o

f ado

lesc

ents

with

diab

etes

– o

ne d

atab

ase

sear

ched

. Des

ktop

revi

ew

(“in

tern

et se

arch

”) o

f onl

ine

trans

ition

reso

urce

s.

You

th w

ith d

iabe

tes m

ellit

us.

73.

Mal

low

et

al(7

3)

2015

U

SA

Res

earc

h Th

e ai

m o

f the

stud

y w

as to

exp

lore

the

impa

ct o

f Dia

bete

s Gro

up M

edic

al

Vis

its (D

GM

Vs)

on

biop

hysi

cal

outc

omes

of c

are

in u

nins

ured

per

sons

with

dia

bete

s.

Ret

rosp

ectiv

e st

udy

usin

g

conv

enie

nce

sam

plin

g of

thos

e

who

atte

nded

DG

MV

s and

usu

al

care

. Int

erve

ntio

n gr

oup

patie

nts

rece

ived

DG

MV

s dur

ing

the

stud

y tim

e fr

ame

and

met

incl

usio

n cr

iteria

. Usu

al c

are

patie

nts w

ere

rand

omly

sele

cted

from

dia

bete

s pat

ient

s rec

eivi

ng

usua

l car

e in

the

stud

y tim

e

fram

e w

ho m

et th

e in

clus

ion

crite

ria.

53 p

atie

nts a

ttend

ed D

GM

Vs a

nd 5

8

atte

nded

usu

al c

are

in th

e st

udy.

All

wer

e ag

ed 1

8 or

ove

r.

Page

72

of 1

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evie

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s Car

e

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44

74.

Man

nucc

i

et a

l(74)

2005

Ita

ly

Res

earc

h To

ass

ess t

he fe

asib

ility

and

eff

icac

y of

an In

tera

ctiv

e Ed

ucat

iona

l and

Sup

port

Gro

up p

rogr

amm

e (I

ESG

) for

pat

ient

s

with

type

1 d

iabe

tes.

The

Inte

ract

ive

Educ

atio

nal a

nd

Supp

ort G

roup

(IES

G) w

as

desi

gned

as a

sem

i-stru

ctur

ed,

long

-term

, ope

n, g

roup

educ

atio

n pr

ogra

mm

e. T

he

prog

ram

me

incl

uded

feat

ures

of

a se

lf-he

lp g

roup

, but

als

o

prov

ided

stru

ctur

ed in

form

atio

n

abou

t the

con

ditio

n. P

re- a

nd

post

ass

essm

ent o

f met

abol

ic

cont

rol a

nd d

iabe

tes r

elat

ed

qual

ity o

f life

.

Age

rang

e: 3

0.7±

8.4

(mea

n±SD

)

Page

73

of 1

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eer R

evie

w O

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Dia

bete

s Car

e

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45

75.

Mar

kow

itz

&

Lef

fel(7

5)

2011

U

S R

esea

rch

Th

e au

thor

s im

plem

ente

d an

d ev

alua

ted

a su

ppor

t gro

up fo

r you

ng a

dults

with

Type

1 d

iabe

tes a

s a p

ilot p

roje

ct

You

th w

ith d

iabe

tes p

artic

ipat

ed

in m

onth

ly, p

rofe

ssio

nally

led

supp

ort g

roup

s for

5 m

onth

s.

Que

stio

nnai

res w

ere

com

plet

ed

pre-

and

post

-gro

up a

nd c

hart

revi

ew d

ata

wer

e co

llect

ed

rega

rdin

g gl

ycae

mic

con

trol a

nd

visi

t fre

quen

cy in

the

year

befo

re a

nd a

fter g

roup

parti

cipa

tion.

15 y

oung

adu

lts w

ith T

ype

1 di

abet

es

(18–

30 y

ears

) (93

% fe

mal

e, 9

2% w

hite

).

Mea

n ag

e w

as 2

6 +

3.3

year

s, di

abet

es

dura

tion

was

10.

6 +

8.0

year

s (ra

nge

1–

22 y

ears

). Pa

rtici

pant

s w

ere

high

ly

educ

ated

(> 8

5%

obta

ined

a b

ache

lor’

s deg

ree

or h

ighe

r),

80%

wer

e si

ngle

and

93%

had

no

child

ren.

The

maj

ority

wer

e se

en in

an

adul

t

diab

etes

clin

ic (7

5%),

with

the

rem

aind

er tr

eate

d by

pae

diat

ric

prov

ider

s. Th

e m

ajor

ity (8

6%) h

ad n

ever

befo

re p

artic

ipat

ed in

any

dia

bete

s

supp

ort g

roup

or c

omm

unity

-bas

ed

prog

ram

me.

76.

Mea

d &

Mac

Nei

l(7

6)

2004

U

SA

Res

earc

h To

pre

sent

a p

ersp

ectiv

e on

pee

r

supp

ort t

hat d

efin

es it

s diff

eren

ce a

nd

also

mai

ntai

ns it

s int

egrit

y to

the

mov

emen

t fro

m w

hich

it c

ame.

Writ

ten

refle

ctio

n to

off

er so

me

thin

king

abo

ut p

ract

ice

and

eval

uatio

n st

anda

rds t

hat

may

hel

p di

ffer

ent t

ypes

of p

eer

initi

ativ

es su

stai

n re

al p

eer

supp

ort v

alue

s in

actio

n.

N/A

Page

74

of 1

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ENTI

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or P

eer R

evie

w O

nly

Dia

bete

s Car

e

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46

77.

Mej

ino

et

al(7

7)

2012

N

ethe

rland

s

Res

earc

h Th

is st

udy

exam

ined

the

pers

pect

ives

and

expe

rienc

es o

f pat

ient

s, pa

rent

s,

and

heal

th c

are

prov

ider

s with

shar

ed

med

ical

app

oint

men

ts (S

MA

s) fo

r

child

ren

and

adol

esce

nts w

ith ty

pe 1

diab

etes

.

Surv

ey q

uest

ionn

aire

s and

an

onlin

e fo

cus g

roup

Fifty

-two

patie

nts,

8 pa

rent

s, an

d 36

heal

th c

are

prov

ider

s par

ticip

ated

.

Parti

cipa

ting

patie

nts (

26 b

oys,

26 g

irls)

wer

e be

twee

n 8

and

18 y

ears

old

(mea

n

[M] =

13.

08, s

tand

ard

devi

atio

n [S

D] =

2.51

). O

ne o

r tw

o pa

rent

s (n

= 41

) per

patie

nt w

ere

pres

ent i

n si

x SM

As (

rang

e

4 to

11

pare

nts)

, reg

ardl

ess o

f the

patie

nts’

age

. How

ever

, pat

ient

s und

er

the

age

of 1

2 ye

ars (

n =

14) w

ere

alw

ays

acco

mpa

nied

by

thei

r par

ent(s

) dur

ing

an S

MA

.

78.

Mul

vane

y

et a

l.(78

)

2008

U

S R

esea

rch

To

doc

umen

t bar

riers

and

faci

litat

ors o

f sel

f-m

anag

emen

t as

perc

eive

d by

ado

lesc

ents

with

type

2 d

iabe

tes.

Bet

wee

n 20

03 a

nd 2

005,

6 fo

cus

grou

ps w

ere

used

to e

licit

resp

onse

s fro

m a

dole

scen

ts w

ith

type

-2 d

iabe

tes r

elat

ed

to th

eir s

elf-

man

agem

ent.

Tran

scrip

ts w

ere

code

d by

3

revi

ewer

s. Q

ualit

ativ

e an

alys

es

wer

e co

nduc

ted

usin

g N

VIV

O

softw

are.

Ado

lesc

ents

age

d 13

to 1

9

year

s wer

e re

crui

ted

from

an

acad

emic

med

ical

cen

ter d

iabe

tes c

linic

.

Page

75

of 1

36

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FID

ENTI

AL-F

or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 77: Promises and perils of group clinics for young adults living ...

47

79.

Mur

phy

et

al(7

9)

2011

Ir

elan

d R

esea

rch

To u

nder

stan

d th

e ex

perie

nce

of

parti

cipa

nts i

n th

e D

ose

Adj

ustm

ent f

or

Nor

mal

Eat

ing

prog

ram

me

and

to

iden

tify

fact

ors t

hat i

nflu

ence

parti

cipa

nts'

impl

emen

tatio

n of

the

self-

man

agem

ent g

uide

lines

.

Qua

litat

ive

inte

rvie

ws w

ith 4

0

parti

cipa

nts i

n Ir

elan

d.

Adu

lts w

ith ty

pe 1

dia

bete

s who

had

com

plet

ed a

Dos

e A

djus

tmen

t for

Nor

mal

Eat

ing

prog

ram

me

(aro

und

one

quar

ter o

f par

ticip

ants

wer

e ag

ed

betw

een

20-3

0 ye

ars)

.

80.

Mur

phy

et

al(8

0)

2006

U

K

Syst

emat

ic

revi

ew

To u

pdat

e th

e ex

istin

g da

taba

se o

f

psyc

hoed

ucat

iona

l int

erve

ntio

ns (p

ost

1999

).

27 a

rticl

es d

escr

ibin

g th

e

eval

uatio

n of

24

psyc

ho-

educ

atio

nal i

nter

vent

ions

. Eff

ect

size

s are

cal

cula

ted

and

data

sum

mar

y ta

bles

pre

sent

ed.

Chi

ldre

n an

d yo

ung

peop

le w

ith T

ype

1

diab

etes

(chi

ldre

n de

fined

as t

hose

age

d

5–11

yea

rs a

nd y

oung

peo

ple

as a

ged

12–1

8 ye

ars)

.

81.

New

man

(8

1)

2012

U

S C

omm

enta

ry

Pres

ents

the

pers

pect

ive

of a

scho

ol

nurs

e on

the

need

s of a

dole

scen

ts w

ith

diab

etes

and

exp

erie

nce

with

gro

up

mee

tings

.

n/a

Stud

ents

with

dia

bete

s typ

e 1

or 2

, age

d

15-1

7 ye

ars o

ld.

82.

Nof

fsin

ger

(82)

2009

U

S B

ook

Pres

ents

the

hist

ory

of g

roup

vis

it

mod

els a

nd p

ropo

ses w

ays t

o

succ

essf

ully

impl

emen

t gro

up c

linic

s.

n/a

n/a

Page

76

of 1

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ENTI

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or P

eer R

evie

w O

nly

Dia

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s Car

e

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48

83.

Noo

rdm

an

& v

an

Dul

men

(83

)

2013

N

ethe

rland

s

Res

earc

h To

exa

min

e in

form

atio

nal a

nd

emot

iona

l pat

ient

–pro

vide

r and

pat

ient

patie

nt c

omm

unic

atio

n

sequ

ence

s (i.e

. cue

s and

subs

eque

nt

resp

onse

s) d

urin

g Sh

ared

Med

ical

App

oint

men

ts (S

MA

s) fo

r chi

ldre

n an

d

adol

esce

nts w

ith ty

pe 1

Dia

bete

s

Mel

litus

(T1D

M) a

nd th

eir p

aren

ts.

Vid

eo-r

ecor

ding

s wer

e m

ade.

Com

mun

icat

ion

sequ

ence

s, in

clud

ing

info

rmat

iona

l and

em

otio

nal

cues

and

resp

onse

s wer

e ra

ted

usin

g an

ada

ptat

ion

of

the

Med

ical

Inte

rvie

w A

ural

Rat

ing

Scal

e.

57 c

hild

ren/

adol

esce

nts w

ith T

1DM

and

36 h

ealth

care

pro

vide

rs p

artic

ipat

ed in

ten

SMA

s in

seve

n D

utch

hos

pita

ls.

Mea

n ag

e in

yea

rs (S

D; r

ange

) 14

year

s

(SD

: 2.6

;

rang

e: 8

–18)

. One

or b

oth

pare

nts (

n =

41, r

ange

: 4–1

1 pa

rent

s) fr

om 3

5

child

ren/

adol

esce

nts w

ere

pres

ent i

n si

x pr

otoc

olle

d SM

As.

Dur

ing

four

SM

As n

one

of th

e pa

rent

s wer

e

pres

ent.

84.

Nor

ris e

t

al(8

4)

2002

U

S Sy

stem

atic

revi

ew

To re

view

the

effe

ctiv

enes

s and

econ

omic

eff

icie

ncy

of se

lf-

man

agem

ent e

duca

tion

inte

rven

tions

for p

eopl

e w

ith d

iabe

tes,

incl

udin

g

inte

rven

tions

in se

tting

s out

side

the

hom

e, c

linic

, sch

ool,

or w

orks

ite.

Five

dat

abas

es w

ere

sear

ched

and

30 st

udie

s wer

e in

clud

ed in

the

revi

ew.

Var

ious

, inc

ludi

ng a

dults

, you

ng p

eopl

e

and

child

ren.

85.

O'H

ara

et

al(8

5)

2016

Ir

elan

d Sy

stem

atic

revi

ew

To sy

nthe

size

the

evid

ence

rega

rdin

g

the

effe

ctiv

enes

s of i

nter

vent

ions

aim

ed

at im

prov

ing

clin

ical

, beh

avio

ural

or

psyc

hoso

cial

out

com

es fo

r you

ng a

dults

with

Typ

e 1

diab

etes

.

Five

ele

ctro

nic

data

base

s wer

e

sear

ched

and

18

pape

rs w

ere

incl

uded

in n

arra

tive

synt

hesi

s.

You

ng a

dults

age

d be

twee

n 15

-30

year

s

with

Typ

e 1

diab

etes

Page

77

of 1

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ENTI

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or P

eer R

evie

w O

nly

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bete

s Car

e

Page 79: Promises and perils of group clinics for young adults living ...

49

86.

Pals

et

al(8

6)

2016

D

enm

ark

Res

earc

h Th

e ob

ject

ive

of th

e st

udy

is to

exp

lore

the

effe

cts o

f Nex

t edu

catio

n (N

EED

),

a pa

rtici

pato

ry p

atie

nt e

duca

tion

appr

oach

in d

iabe

tes e

duca

tion.

A q

uasi

exp

erim

enta

l des

ign

usin

g in

terv

entio

n an

d co

ntro

l

site

s was

use

d to

car

ry o

ut a

real

ist e

valu

atio

n on

NEE

D to

help

gai

n in

sigh

t int

o th

e

mec

hani

sms b

y w

hich

the

patie

nt e

duca

tion

appr

oach

func

tione

d. D

ata

wer

e co

llect

ed

thro

ugh

ques

tionn

aire

s,

inte

rvie

ws a

nd o

bser

vatio

ns.

Dat

a w

as a

naly

sed

usin

g

desc

riptiv

e st

atis

tics,

logi

stic

regr

essi

on a

nd sy

stem

atic

text

cond

ensa

tion.

8 in

terv

entio

n sit

es n

=193

, 6 c

ontro

l

site

s, n=

58.

Page

78

of 1

36

CON

FID

ENTI

AL-F

or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 80: Promises and perils of group clinics for young adults living ...

50

87.

Pate

rson

&

Tho

rne(

87

)

2000

C

anad

a R

esea

rch

To

des

crib

e th

e de

velo

pmen

tal

evol

utio

n of

exp

ertis

e in

the

self-

man

agem

ent o

f dia

bete

s as i

t

was

por

traye

d in

a re

sear

ch st

udy

abou

t

expe

rt se

lf-m

anag

emen

t

of p

erso

ns w

ith lo

ng-s

tand

ing

Type

1

diab

etes

.

Gro

unde

d th

eory

stud

y w

hich

ass

umed

that

the

insi

der p

ersp

ectiv

e on

the

com

plex

pro

cess

of s

elf-

man

agem

ent i

s

acce

ssib

le th

roug

h in

terp

retiv

e re

sear

ch

met

hods

Parti

cipa

nts h

ad a

n in

itial

inte

rvie

w a

nd su

bseq

uent

ly

audi

o-ta

ped

thei

r dai

ly se

lf-

man

agem

ent d

ecis

ions

for 3

lots

of o

ne w

eek

perio

ds (t

hrou

ghou

t

one

year

). Tr

ansc

ripts

wer

e us

ed

as p

rom

pts f

or a

dditi

onal

inte

rvie

ws.

At t

he e

nd o

f the

rese

arch

, all

parti

cipa

nts

atte

nded

a 2

hou

r foc

us g

roup

inte

rvie

w w

here

find

ings

wer

e

shar

ed a

nd p

artic

ipan

ts w

ere

invi

ted

to re

flect

on

them

.

Ana

lysi

s of t

he tr

ansc

ripts

was

guid

ed b

y tra

ditio

nal c

onst

ant

com

para

tive

anal

ytic

tech

niqu

es.

22 in

divi

dual

s with

long

stan

ding

(>15

year

s) T

ype

1 di

abet

es, i

dent

ified

as

expe

rt se

lf-m

anag

emen

t dec

isio

n

mak

ers.

Cau

casi

an. 1

4 w

omen

and

8

men

, ran

ged

24-8

1 ye

ars (

M=4

3.3)

. 18

had

high

-sch

ool o

r pos

t-sec

onda

ry

educ

atio

n an

d 8

had

one

or m

ore

diab

etes

-rel

ated

com

plic

atio

n.

Page

79

of 1

36

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ENTI

AL-F

or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 81: Promises and perils of group clinics for young adults living ...

51

88.

Pian

a et

al(8

8)

2010

Ita

ly

Res

earc

h To

intro

duce

a n

arra

tive-

auto

biog

raph

ical

app

roac

h in

the

care

and

educ

atio

n of

ado

lesc

ents

with

type

-

1 di

abet

es.

Ado

lesc

ents

atte

ndin

g on

e 9-

day

sum

mer

cam

p in

200

4, 2

005,

or

2006

par

ticip

ated

in st

ruct

ured

daily

self-

writ

ing

prop

osal

s on

diab

etes

, int

egra

ted

with

dai

ly

inte

ract

ive

self-

man

agem

ent

educ

atio

n. T

hey

late

r fill

ed in

ques

tionn

aire

s on

thei

r

expe

rienc

es a

t the

cam

p an

d

usin

g th

e au

tobi

ogra

phic

al

appr

oach

(50

resp

onse

s/53

.2%

resp

onse

rate

). El

icite

d te

xts

wer

e al

so a

naly

sed

usin

g

cont

ent a

naly

sis.

Nin

ety-

four

ado

lesc

ents

with

type

-1

diab

etes

(age

13–

18 y

ears

).

89.

Pilla

y et

al(8

9)

2015

C

anad

a Sy

stem

atic

revi

ew

To d

eter

min

e th

e ef

fect

s of b

ehav

iora

l

prog

ram

s for

pat

ient

s with

type

1

diab

etes

on

beha

vior

al, c

linic

al, a

nd

heal

th o

utco

mes

and

to in

vest

igat

e

fact

ors t

hat m

ight

mod

erat

e ef

fect

.

Six

elec

troni

c da

taba

ses w

ere

sear

ch a

nd 4

7 pa

pers

wer

e

incl

uded

in th

e re

view

.

Stud

ies f

ocus

ing

on y

outh

s (m

edia

n 13

.5

year

s) a

nd a

dults

(30-

49).

No

stud

ies

focu

sed

on y

oung

or o

lder

adu

lts.

Page

80

of 1

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ENTI

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evie

w O

nly

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s Car

e

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52

90.

Plan

te &

Lob

ato(

90)

2008

U

S Sy

stem

atic

revi

ew

To re

view

the

effic

acy

of g

roup

-bas

ed

psyc

holo

gica

l int

erve

ntio

ns fo

r

child

ren

and

adol

esce

nts w

ith ty

pe 1

diab

etes

.

Two

elec

troni

c da

taba

ses w

ere

sear

ched

and

31

artic

les w

ere

incl

uded

in th

e re

view

.

Chi

ldre

n an

d yo

ung

adul

ts (a

ge ra

nge

8-

23 y

ears

) with

type

1 d

iabe

tes.

91.

Povl

sen

&

Rin

gsbe

rg(

91)

2008

Sw

eden

R

esea

rch

To

exp

lore

how

you

ng a

dults

with

a

non-

wes

tern

imm

igra

nt b

ackg

roun

d an

d

type

1 d

iabe

tes s

ince

child

hood

/ado

lesc

ence

hav

e pe

rcei

ved

lear

ning

to li

ve w

ith th

e di

seas

e, w

ith

spec

ial f

ocus

on

heal

th e

duca

tion

and

supp

ort

A m

ixed

qua

ntita

tive

and

qual

itativ

e de

sign

was

app

lied.

This

incl

uded

data

on

met

abol

ic c

ontro

l for

2002

–200

6 an

d se

mi-s

truct

ured

inte

rvie

ws i

n 20

06

with

ele

ven

stra

tegi

cally

sele

cted

you

ng im

mig

rant

s.

Dat

a w

ere

anal

ysed

usi

ng

qual

itativ

e co

nten

t ana

lysi

s

Elev

en n

on-w

este

rn im

mig

rant

s, de

fined

as p

erso

ns o

r des

cend

ants

of p

erso

ns

with

imm

igra

nt o

r ref

ugee

bac

k-gr

ound

orig

inat

ing

from

cou

ntrie

s out

side

Wes

tern

Eur

ope,

Nor

th A

mer

ica

and

Aus

tralia

, par

ticip

ated

in th

e st

udy.

Thes

e w

ere

six

wom

en a

nd fi

ve m

en

aged

17–

28 y

ears

, who

had

bee

n

diag

nose

d w

ith ty

pe 1

dia

bete

s bet

wee

n

the

age

of

10 a

nd 1

7 ye

ars.

92.

Pow

ell e

t

al(9

2)

2015

U

S R

evie

w

To p

rovi

de a

n ov

ervi

ew o

f new

appr

oach

es to

dia

bete

s car

e

n/a

n/a

Page

81

of 1

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ENTI

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or P

eer R

evie

w O

nly

Dia

bete

s Car

e

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53

93.

Pric

e et

al(9

3)

2016

U

K

Res

earc

h To

ass

ess t

he e

ffec

t of a

5-d

ay

stru

ctur

ed e

duca

tion

cour

se (K

ids i

n

Con

trol o

f Foo

d; K

ICk-

OFF

) on

biom

edic

al a

nd p

sych

olog

ical

out

com

es

in y

oung

peo

ple

with

Typ

e 1

diab

etes

.

Clu

ster

-ran

dom

ized

tria

l

invo

lvin

g 31

UK

pae

diat

ric

cent

res

Parti

cipa

nts w

ere

11-1

6 ye

ars o

f age

and

had

Type

1 d

iabe

tes f

or a

t lea

st o

ne y

ear.

Page

82

of 1

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w O

nly

Dia

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s Car

e

Page 84: Promises and perils of group clinics for young adults living ...

54

94.

Pyat

ak e

t

al.(9

4)

2016

U

S R

esea

rch

The

auth

ors i

dent

ified

and

trea

ted

youn

g ad

ults

with

type

1 d

iabe

tes w

ho

had

been

lost

to

follo

w-u

p du

ring

thei

r tra

nsfe

r fro

m

paed

iatri

c to

adu

lt ca

re, c

ompa

ring

thei

r

clin

ical

, psy

chos

ocia

l,

and

heal

th c

are

utili

zatio

n ou

tcom

es to

parti

cipa

nts r

ecei

ving

con

tinuo

us c

are

(CC

) thr

ough

out t

he tr

ansi

tion

to a

dult

care

.

Indi

vidu

als i

n th

eir l

ast y

ear o

f

paed

iatri

c ca

re (C

C g

roup

, n ¼

51) a

nd in

divi

dual

s los

t to

follo

w-u

p in

the

trans

fer t

o ad

ult

care

(“la

psed

car

e” [L

C] g

roup

,

n ¼

24)

wer

e fo

llow

ed

pros

pect

ivel

y fo

r 12

mon

ths.

All

parti

cipa

nts w

ere

prov

ided

deve

lopm

enta

lly ta

ilore

d

diab

etes

educ

atio

n, c

ase

man

agem

ent,

and

clin

ical

car

e th

roug

h a

stru

ctur

ed tr

ansi

tion

prog

ram

.

The

grou

ps w

ere

then

com

pare

d

on d

iabe

tes c

are

visi

ts,

glyc

emic

con

trol,

epis

odes

of

seve

re h

ypog

lyce

mia

(def

ined

as

requ

iring

ass

ista

nce

and/

or c

hang

e in

men

tal s

tatu

s),

emer

genc

y de

partm

ent v

isits

,

hosp

italis

atio

ns, a

nd

psyc

hoso

cial

out

com

es.

Parti

cipa

nt c

riter

ia: a

ge 1

9-25

yea

rs a

t

the

time

of st

udy

enro

lmen

t; (2

) dia

gnos

is o

f

type

1 d

iabe

tes

acco

rdin

g to

Am

eric

an D

iabe

tes

Ass

ocia

tion

crite

ria fo

r at l

east

2 ye

ars;

and

(3) p

artic

ipan

t not

pre

gnan

t

at th

e tim

e of

stud

y

enro

lmen

t or p

lann

ing

preg

nanc

y w

ithin

the

next

12

mon

ths

Page

83

of 1

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evie

w O

nly

Dia

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s Car

e

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55

95.

Ram

das &

Dar

zi(9

5)

2017

U

K

Res

earc

h To

exp

lore

why

giv

en th

e ef

fect

iven

ess

of g

roup

inte

rven

tions

, doc

tors

are

not

rout

inel

y

usin

g th

em to

trea

t phy

sica

l and

men

tal

cond

ition

s?

Shor

t rep

ort,

whi

ch i

dent

ified

and

disc

usse

s fou

r cru

cial

com

pone

nts (

(1) r

igor

ous

scie

ntifi

c

evid

ence

supp

ortin

g th

e va

lue

of

shar

ed a

ppoi

ntm

ents

, 2) e

asy

way

s to

pilo

t and

refin

e sh

ared

-

appo

intm

ent m

odel

s bef

ore

appl

ying

them

in p

artic

ular

car

e

setti

ngs,

3) re

gula

tory

chan

ges o

r inc

entiv

es th

at

supp

ort t

he u

se o

f suc

h m

odel

s,

4) re

leva

nt p

atie

nt a

nd c

linic

ian

educ

atio

n), w

hich

may

be

mi s

sing

from

gro

up

inte

rven

tions

and

the

auth

ors

belie

ve a

re n

eces

sary

for a

ny

high

ly in

nova

tive

serv

ice-

deliv

ery

mod

el to

bec

ome

stan

dard

.

N/A

Page

84

of 1

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s Car

e

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56

96.

Ran

kin

et

al.(9

6)

2011

U

K

Res

earc

h To

info

rm fu

ture

edu

catio

nal

inte

rven

tions

, the

aut

hors

exp

lore

d

patie

nts’

acc

ount

s of t

he e

duca

tion

and

info

rmat

ion

they

had

rece

ived

sinc

e

diag

nosi

s, an

d th

e re

ason

s beh

ind

gaps

in th

eir d

iabe

tes k

now

ledg

e

Sem

i-stru

ctur

ed in

terv

iew

s wer

e

cond

ucte

d w

ith 3

0 ty

pe 1

diab

etes

pat

ient

s enr

olle

d on

a

stru

ctur

ed e

duca

tion

prog

ram

me

in th

e U

K. D

ata

wer

e an

alys

ed

usin

g an

indu

ctiv

e, th

emat

ic

appr

oach

.

30 p

artic

ipan

ts a

ged

18-5

6 (1

6 fe

mal

es

and

14 m

ales

) wer

e re

crui

ted

from

six

cour

ses a

cros

s fiv

e di

abet

es c

entre

s in

the

UK

.

97.

Ran

kin

et

al(9

7)

2014

U

K

Res

earc

h To

exp

lore

pat

ient

s' ex

perie

nces

of,

view

s abo

ut a

nd n

eed

for,

soci

al

supp

ort a

fter a

ttend

ing

a st

ruct

ured

educ

atio

n pr

ogra

mm

e fo

r typ

e 1

diab

etes

.

Rep

eat q

ualit

ativ

e in

terv

iew

s

follo

win

g co

mpl

etio

n of

the

Dos

e A

djus

tmen

t for

Nor

mal

Eatin

g co

urse

and

gro

unde

d

theo

ry a

naly

sis.

30 a

dult

patie

nts w

ith ty

pe 1

dia

bete

s

recr

uite

d fr

om D

ose

Adj

ustm

ent f

or

Nor

mal

Eat

ing

cour

ses (

age:

36.

1mea

11.6

SD; r

ange

18–

56).

98.

Ran

kin

et

al(9

8)

2012

U

K

Res

earc

h To

exp

lore

the

supp

ort n

eeds

of p

atie

nts

with

type

1 d

iabe

tes a

fter a

ttend

ing

a

stru

ctur

ed e

duca

tion

prog

ram

me.

Rep

eat q

ualit

ativ

e in

terv

iew

s

follo

win

g co

mpl

etio

n of

the

Dos

e A

djus

tmen

t for

Nor

mal

Eatin

g co

urse

. Dat

a w

ere

anal

ysed

indu

ctiv

ely.

30 a

dult

patie

nts w

ith ty

pe 1

dia

bete

s

recr

uite

d fr

om D

ose

Adj

ustm

ent f

or

Nor

mal

Eat

ing

cour

ses (

age:

36.

1mea

11.6

SD; r

ange

18–

56).

Page

85

of 1

36

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ENTI

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evie

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Dia

bete

s Car

e

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57

99.

Ray

mon

d

et a

l(99)

2015

U

S R

esea

rch

Feas

ibili

ty a

nd a

ccep

tabi

lity

pilo

t stu

dy

of T

eam

Clin

ics t

hat w

as c

arrie

d ou

t

befo

re b

egin

ning

a ra

ndom

ized

,

cont

rolle

d tri

al o

f thi

s pro

gram

.

Satis

fact

ion

surv

ey

92 p

atie

nts p

artic

ipat

ed in

Tea

m C

linic

(mea

n ag

e 15

.82

± 2.

1 ye

ars,

43%

fem

ale,

60%

non

-His

pani

c w

hite

, 24%

His

pani

c/La

tino,

6%

blac

k; re

flect

ive

of th

e ov

eral

l clin

ic

popu

latio

n)

Page

86

of 1

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ENTI

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or P

eer R

evie

w O

nly

Dia

bete

s Car

e

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58

100.

Rei

tz e

t

al(1

00)

2012

U

SA

Res

earc

h Th

e pu

rpos

e of

the

stud

y w

as to

eval

uate

the

effe

ct o

f a d

iabe

tes s

uppo

rt

and

educ

atio

n gr

oup

visi

t pro

gram

on,

HB

A1c

con

cent

ratio

n, lo

w-d

ensi

ty

lipop

rote

in c

once

ntra

tion,

BP

targ

ets

and

wei

ght c

hang

es se

vera

l mon

ths

afte

r pro

gram

com

men

cem

ent.

A q

uasi

-exp

erim

enta

l mat

ched

cont

rolle

d pr

e- a

nd p

ost-s

tudy

desi

gn w

as u

sed

to c

ompa

re

diff

eren

ces i

n th

e m

easu

red

outc

omes

bet

wee

n th

e di

abet

ic

patie

nts i

n th

e gr

oup

visi

t

prog

ram

and

thos

e in

a m

atch

ed

com

paris

on g

roup

. The

bas

elin

e

varia

bles

of e

ach

grou

p, a

nd th

e

chan

ges f

rom

bas

elin

e, w

ith

adju

stm

ent f

or b

asel

ine

valu

es

durin

g th

e fo

llow

-up

perio

d of

7

mon

ths,

wer

e co

mpa

red

with

the

Coc

hran

Man

tel H

aens

zel

(CM

H) s

tatis

tic. T

he n

umbe

r of

offic

e vi

sits

dur

ing

the

follo

w-

up p

erio

d w

as a

lso

com

pare

d.

The

leve

l of s

igni

fican

ce fo

r

grou

p co

mpa

rison

s was

set a

t an

alph

a va

lue

of le

ss th

an 0

.05.

SAS

Ente

rpris

e G

uide

4.1

was

used

for d

ata

anal

ysis

.

Gro

up v

isit

prog

ram

(n=5

2) a

nd

com

paris

on g

roup

pat

ient

s (n=

236)

wer

e

draw

n fr

om fa

mily

pra

ctic

e, ≥

18 y

ears

and

had

type

2 d

iabe

tes w

ith a

t lea

st o

ne

visi

t to

the

prac

tice

in th

e pr

eced

ing

year

.

Page

87

of 1

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ENTI

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evie

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e

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59

101.

Rijs

wijk

et

al(1

01)

2010

N

ethe

rland

s

Res

earc

h Th

e fo

llow

ing

rese

arch

que

stio

ns w

ere

addr

esse

d:

1. W

hat a

re th

e di

ffer

ence

s bet

wee

n a

tradi

tiona

l ind

ivid

ual

outp

atie

nt v

isit

and

an S

MA

for

child

ren

and

adol

esce

nts w

ith

type

1 d

iabe

tes i

n:

a. th

e am

ount

of d

iabe

tes-

rela

ted

topi

cs

disc

usse

d?

b. th

e co

nver

satio

nal c

ontri

butio

ns o

f

the

parti

cipa

nts?

2. H

ow d

o ch

ildre

n an

d ad

oles

cent

s

asse

ss th

e so

cial

and

info

rmat

iona

l asp

ects

of a

n SM

A?

Vid

eota

pes o

f 42

indi

vidu

al

outp

atie

nt v

isits

and

5 S

MA

s

with

31

child

ren

or a

dole

scen

ts

wer

e co

llect

ed a

nd o

bser

ved

usin

g a

chec

klis

t of t

opic

s.

Surv

ey q

uest

ionn

aire

on

view

s

abou

t par

ticip

atio

n in

the

SMA

s.

Parti

cipa

ting

patie

nts w

ere

betw

een

6

year

s and

19

year

s of a

ge a

nd

parti

cipa

ted

in d

iffer

ent a

ge g

roup

s, of

6–12

(chi

ldre

n) a

nd 1

3–19

yea

rs

(ado

lesc

ents

). //

The

patie

nts w

ere

on

aver

age

12.8

(SD

2.8

; ran

ge 6

–19)

yea

rs

of a

ge in

the

indi

vidu

al c

onsu

ltatio

ns

and

12.3

(SD

2.7

; ran

ge 8

–18)

yea

rs in

the

SMA

s (ns

). Pa

rent

s par

ticip

ated

in

all S

MA

s.

102.

Rith

olz

et

al(1

02)

2011

U

S Sy

stem

atic

revi

ew

To u

nder

stan

d ho

w q

ualit

ativ

e re

sear

ch

cont

ribut

es to

an

incr

ease

d

unde

rsta

ndin

g f b

ehav

iour

al d

iabe

tes.

The

pape

r syn

thes

ises

find

ings

in n

arra

tive

form

.

Chi

ldre

n, a

dole

scen

ts, a

nd a

dult

patie

nts

with

bot

h ty

pe 1

and

type

2 d

iabe

tes

Page

88

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60

103.

Rob

inso

n(

103)

2015

U

K

Res

earc

h

To g

ain

grea

ter i

nsig

ht in

to th

e

expe

rienc

e of

bei

ng d

iagn

osed

with

type

1 d

iabe

tes d

urin

g ad

oles

cenc

e, a

nd

the

fact

ors t

hat i

nflu

ence

how

a y

oung

pers

on m

akes

sens

e of

the

cond

ition

over

tim

e.

Uns

truct

ured

inte

rvie

ws w

ere

cond

ucte

d an

d re

sults

wer

e

anal

ysed

usi

ng In

terp

reta

tive

phen

omen

olog

ical

ana

lysi

s

Eigh

t adu

lts, a

ged

28–3

6 ye

ars w

ho w

ere

diag

nose

d w

ith

diab

etes

dur

ing

adol

esce

nce

104.

Ros

tam

i et

al.(1

04)

2014

Ir

an

Res

earc

h Th

is st

udy

escr

ibes

and

exp

lore

s the

expe

rienc

es o

f sup

port

in Ir

ania

n

adol

esce

nts w

ith T

1DM

in o

rder

to

prov

ide

cultu

re a

nd c

onte

xt sp

ecifi

c

rese

arch

of T

1DM

in o

rder

to im

prov

e

know

ledg

e of

how

cul

tura

l fac

tors

influ

ence

the

prov

isio

n of

supp

ort t

o

adol

esce

nts w

ith T

1DM

.

Sem

i-stru

ctur

ed in

terv

iew

s wer

e

used

and

con

tent

ana

lysi

s was

cond

ucte

d

A se

mi-s

truct

ured

inte

rvie

w

sche

dule

was

dev

elop

ed to

guid

e gr

oup

disc

ussi

ons

base

d on

the

rese

arch

que

stio

ns

Purp

osiv

e sa

mpl

ing

was

use

d to

iden

tify

parti

cipa

nts w

ho w

ere

10-1

9 ye

ars o

ld,

had

T1D

M fo

r at l

east

two

year

s and

had

no o

ther

chr

onic

dis

ease

s. 7

mal

es a

nd 3

fem

ales

wer

e re

crui

ted

at tw

o di

abet

es

man

agem

ent c

linic

s in

Iran

.

Page

89

of 1

36

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ENTI

AL-F

or P

eer R

evie

w O

nly

Dia

bete

s Car

e

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61

105.

Sadu

r et

al(1

05)

1999

U

SA

Res

earc

h To

eva

luat

e th

e ef

fect

iven

ess o

f a

clus

ter v

isit

mod

el le

d by

a d

iabe

tes

nurs

e ed

ucat

or fo

r del

iver

ing

outp

atie

nt

care

man

agem

ent t

o ad

ult p

atie

nts w

ith

poor

ly c

ontro

lled

diab

etes

.

Ran

dom

ised

con

trol t

rial.

Inte

rven

tion

subj

ects

rece

ived

mul

tidis

cipl

inar

y ou

tpat

ient

diab

etes

car

e m

anag

emen

t in

clus

ter v

isit

setti

ngs o

f 10–

18

patie

nts/

mon

th fo

r 6 m

onth

s.

The

outc

omes

ava

ilabl

e fo

r the

stud

y in

clud

ed p

ost i

nter

vent

ion

HbA

1c le

vels

; sel

f-re

porte

d

mea

sure

s of s

elf-

care

pra

ctic

es,

self-

effic

acy,

and

satis

fact

ion

with

gen

eral

med

ical

car

e an

d

with

dia

bete

s spe

cific

car

e;

mea

sure

s of u

tiliz

atio

n of

inpa

tient

and

out

patie

nt se

rvic

es

befo

re ,

durin

g, a

nd a

fter t

he 6

-

mon

th in

terv

entio

n th

roug

h th

e

end

of 1

997;

and

tota

l cos

ts o

f

care

for t

he sa

me

perio

ds

Parti

cipa

nts a

ged

16-7

5 ye

ars w

ith

HB

A1c

con

cent

ratio

n >8

.5%

or n

o

HB

A1c

mea

sure

men

t for

the

prev

ious

year

, wer

e ra

ndom

ised

to a

n in

terv

entio

n

grou

p (n

=97)

or a

usu

al c

are

grou

p

(n=8

8).

Page

90

of 1

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e

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62

106.

Satt

oe e

t

al(1

06)

2015

N

ethe

rland

s

Syst

emat

ic

revi

ew

To p

rovi

de a

syst

emat

ic o

verv

iew

of

self-

man

agem

ent i

nter

vent

ions

(SM

I)

for y

oung

peo

ple

with

chr

onic

cond

ition

s.

Six

data

base

s wer

e se

arch

ed a

nd

86 st

udie

s wer

e in

clud

ed in

the

revi

ew –

of t

hose

16

artic

les

refe

rred

to d

iabe

tes.

You

ng p

eopl

e (a

ged

7–25

yea

rs) w

ith

som

atic

chr

onic

con

ditio

ns o

r phy

sica

l

disa

bilit

y, in

clud

ing

diab

etes

.

107.

Saw

tell

et

al(1

07)

2015

U

K

Res

earc

h To

ass

ess t

he fe

asib

ility

, acc

epta

bilit

y,

fidel

ity, a

nd p

erce

ived

impa

ct o

f the

stru

ctur

ed e

duca

tiona

l gro

up p

rogr

am

Chi

ld a

nd A

dole

scen

t Stru

ctur

ed

Com

pete

ncie

s App

roac

h to

Dia

bete

s

Educ

atio

n (C

ASC

AD

E).

Mix

ed m

etho

ds p

roce

ss

eval

uatio

n, e

mbe

dded

with

in a

clus

ter r

ando

miz

ed c

ontro

l tria

l

in 2

8 pe

diat

ric d

iabe

tes c

linic

s

acro

ss E

ngla

nd. T

he e

valu

atio

n

used

mul

tiple

met

hods

,

incl

udin

g qu

estio

nnai

res,

obse

rvat

ion

and

qual

itativ

e

inte

rvie

ws.

362

child

ren

parti

cipa

ted,

age

d 8-

16

year

s with

type

1 d

iabe

tes.

108.

Schi

lling

et

al(1

08)

2002

U

S Sy

stem

atic

revi

ew

To c

larif

y th

e co

ncep

t of s

elf-

man

agem

ent o

f typ

e 1

diab

etes

in

child

ren

and

adol

esce

nts.

Thre

e da

taba

ses w

ere

sear

ched

and

nine

ty n

ine

refe

renc

es w

ere

revi

ewed

.

Chi

ldre

n an

d ad

oles

cent

s age

d 6-

17

year

s.

Page

91

of 1

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evie

w O

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bete

s Car

e

Page 93: Promises and perils of group clinics for young adults living ...

63

109.

Schi

lling

er

et a

l(109

)

2008

U

SA

Res

earc

h To

exa

min

e w

heth

er ta

ilore

d se

lf-

man

agem

ent s

uppo

rt (S

MS)

stra

tegi

es

reac

h pa

tient

s in

a sa

fety

net

syst

em.

Var

iatio

n by

lang

uage

, lite

racy

and

insu

ranc

e w

as e

xplo

red.

An

effe

ctiv

enes

s stu

dy o

f SM

S

nest

ed w

ithin

a ra

ndom

ized

tria

l

amon

g di

vers

e di

abet

es p

atie

nts

in a

safe

ty n

et sy

stem

. Eng

lish-

,

Span

ish-

and

Can

tone

se-

spea

king

dia

bete

s pat

ient

s wer

e

rand

omiz

ed to

wee

kly

auto

mat

ed te

leph

one

dise

ase

man

agem

ent (

ATD

M) o

r

mon

thly

gro

up m

edic

al v

isits

(GM

Vs)

. Tho

se ra

ndom

ised

to

AD

TM re

ceiv

ed w

eekl

y ph

one

calls

(6-1

2min

s) in

thei

r nat

ive

lang

uage

for 9

mon

ths.

Thos

e in

the

GM

V a

rm re

ceiv

ed la

ngua

ge

spec

ific

GM

Vs m

onth

ly fo

r 9

mon

ths.

Thes

e se

ssio

ns’ 6

-10

parti

cipa

nts a

nd la

sted

appr

oxim

atel

y 90

min

utes

.

Patie

nts w

ho w

ere

olde

r tha

n ag

e 17

;

had

ICD

-9 c

odes

con

sist

ent w

ith ty

pe 2

diab

etes

; spo

ke E

nglis

h, S

pani

sh, o

r

Can

tone

se; m

ade

≥1 p

rimar

y ca

re v

isit

in th

e pr

ior y

ear;

and

had

≥1 h

emog

lobi

n

A1c

val

ue (H

bA1c

) - A

ge (y

ears

): M

(SD

) 55.

4 (1

1.9)

Page

92

of 1

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evie

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bete

s Car

e

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64

110.

Schm

idt e

t

al.(1

10)

2016

G

erm

any

R

esea

rch

To

test

the

effe

cts o

f a g

ener

ic

trans

ition

-orie

nted

pat

ient

edu

catio

n

prog

ram

on

adol

esce

nts’

hea

lth se

rvic

e

parti

cipa

tion

and

qual

ity o

f life

(QoL

).

The

auth

ors c

ondu

cted

a

cont

rolle

d tri

al c

ompa

ring

parti

cipa

nts o

f 29

trans

ition

wor

ksho

ps w

ith

treat

men

t as u

sual

. A

two-

day

trans

ition

wor

ksho

p w

as c

arrie

d

out a

t 12

sites

in G

erm

any,

focu

sing

in st

anda

rdiz

ed

mod

ules

on

adju

stm

ent t

o ad

ult

care

setti

ngs,

orga

niza

tion

of

futu

re d

isea

se m

anag

emen

t,

care

er c

hoic

es a

nd p

artn

ersh

ip.

Stud

y ou

tcom

es w

ere

heal

th-

rela

ted

trans

ition

com

pete

nce,

self-

effic

acy,

satis

fact

ion

with

care

, pat

ient

act

ivat

ion

and

QoL

.

Mea

sure

s wer

e as

sess

ed a

t

base

line

and

six-

mon

th fo

llow

-

up.

Rep

eate

d m

easu

rem

ent

cova

rianc

e an

alys

is u

sing

age

as

a co

varia

te w

as c

ondu

cted

.

274

adol

esce

nts (

16.8

mea

n ag

e, S

D =

1.76

) dia

gnos

ed w

ith ty

pe I

diab

etes

(DM

), C

ystic

fibr

osis

(CF)

or

infla

mm

ator

y bo

wel

dis

ease

(IB

D)

Page

93

of 1

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s Car

e

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65

111.

Schu

ltz e

t

al.(1

11)

2017

U

S R

esea

rch

To e

xam

ine

whi

ch c

ompo

nent

s of

trans

ition

pro

gram

s are

eff

ectiv

e in

impr

ovin

g ou

tcom

es

follo

win

g tra

nsfe

r

Syst

emat

ic re

view

/met

a-an

alys

is

11-2

6 ye

ars o

ld w

ith ty

pe 1

dia

bete

s

Page

94

of 1

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ENTI

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or P

eer R

evie

w O

nly

Dia

bete

s Car

e

Page 96: Promises and perils of group clinics for young adults living ...

66

112.

Sequ

eira

et

al.(1

12)

2015

U

S R

esea

rch

To e

valu

ate

the

effic

acy

of a

stru

ctur

ed

trans

ition

pro

gram

com

pare

d w

ith u

sual

care

in im

prov

ing

rout

ine

follo

w-u

p,

clin

ical

, and

psy

chos

ocia

l out

com

es

amon

g

youn

g ad

ults

with

type

1 d

iabe

tes

You

ng a

dults

with

type

1

diab

etes

in th

eir l

ast y

ear o

f

pedi

atric

car

e w

ere

recr

uite

d

from

thre

e cl

inic

s. In

terv

entio

n

grou

p pa

rtici

pant

s (n

= 51

)

rece

ived

a st

ruct

ured

trans

ition

pro

gram

inco

rpor

atin

g

tailo

red

diab

etes

edu

catio

n, c

ase

man

agem

ent,

grou

p ed

ucat

ion

clas

ses,

and

acce

ss to

a n

ewly

deve

lope

d yo

ung

adul

t dia

bete

s

clin

ic a

nd tr

ansi

tion

web

site

.

Con

trol g

roup

par

ticip

ants

(n =

30) r

ecei

ved

usua

l car

e. T

he

prim

ary

outc

ome

was

the

num

ber o

f rou

tine

clin

ic v

isits

.

Seco

ndar

y

outc

omes

incl

uded

gly

caem

ic

cont

rol,

hypo

glyc

aem

ia, h

ealth

care

use

, and

psy

chos

ocia

l

wel

l-bei

ng. A

sses

smen

ts w

ere

cond

ucte

d at

bas

elin

e, a

nd 6

and

12

mon

ths.

81 y

oung

adu

lts (5

1 in

inte

rven

tion

grou

p an

d 30

in c

ontro

l gro

up)

diag

nose

d w

ith ty

pe 1

dia

bete

s for

at

leas

t tw

o ye

ars,

aged

19-

25.

Parti

cipa

nts h

ad to

be

rece

ivin

g

rout

ine

diab

etes

car

e by

an

assi

gned

pro

vide

r, an

d 4)

in th

e la

st

year

of p

edia

tric

care

, def

ined

as

antic

ipat

ing

trans

ition

to a

dult

care

with

in th

e ne

xt y

ear.

Page

95

of 1

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bete

s Car

e

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67

113.

Serl

achi

us

et a

l.(11

3)

2011

A

ustra

lia

Res

earc

h To

exp

lore

stre

ssor

s in

peop

le w

ith

T1D

M a

nd g

ain

feed

back

on

adap

ting

a

gene

ric c

opin

g sk

ills p

rogr

amm

e.

Focu

s gro

ups w

ere

cond

ucte

d

13 a

dole

scen

ts (1

3-17

) with

T1D

M

114.

Skin

ner

et

al.(1

14)

2000

U

K

Res

earc

h To

exa

min

e w

heth

er p

eer s

uppo

rt an

d

illne

ss re

pres

enta

tion

med

iate

the

link

betw

een

fam

ily su

ppor

t, se

lf-

man

agem

ent a

nd w

ell-b

eing

.

Parti

cipa

nts w

ere

recr

uite

d an

d

follo

wed

ove

r 6 m

onth

s. Th

ey

com

plet

ed q

uest

ionn

aire

asse

ssm

ents

on

self-

man

agem

ent,

wel

l-bei

ng a

nd

soci

al su

ppor

t.

52 a

dole

scen

ts(1

2-18

yea

rs o

ld) w

ith

Type

1 d

iabe

tes

115.

Smal

done

et a

l(115

)

2006

U

S R

esea

rch

To e

xam

ine

char

acte

ristic

s of p

atie

nts

with

type

1 a

nd ty

pe 2

dia

bete

s and

conc

lude

whe

ther

gro

up e

duca

tion

clas

ses s

houl

d be

sepa

rate

d by

type

of

diab

etes

.

Qua

ntita

tive

stud

y m

easu

ring

clin

ical

mar

kers

, sel

f-ca

re

beha

viou

rs, p

sych

osoc

ial

outc

omes

, foo

d ch

oice

s and

phys

ical

act

ivity

.

101

patie

nts w

ith ty

pe 1

dia

bete

s (m

ean

age

44 a

nd S

D 1

2.4

year

s) a

nd 1

07

patie

nts w

ith ty

pe 2

dia

bete

s (m

ean

age

57 a

nd S

D 9

.2 y

ears

).

116.

Soni

&

Ng(

116)

2014

U

K

Syst

emat

ic

revi

ew

To e

xam

ine

the

key

aspe

cts o

f

impr

ovin

g m

etab

olic

con

trol i

n ch

ildre

n

and

youn

g pe

ople

.

Find

ings

are

des

crib

ed in

narr

ativ

e fo

rm –

oth

er

met

hodo

logi

cal d

etai

ls a

re

mis

sing

.

Chi

ldre

n an

d yo

ung

adul

ts <

20

year

s.

Page

96

of 1

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s Car

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68

117.

Spen

cer

et

al.(1

17)

2013

U

K

Res

earc

h To

exp

lore

the

soci

al e

nviro

nmen

ts

youn

g pe

ople

with

type

1 d

iabe

tes

inha

bit,

and

the

pote

ntia

l inf

luen

ce o

f

thes

e en

viro

nmen

ts o

n th

eir g

lyca

emic

cont

rol.

In-d

epth

inte

rvie

ws w

ere

cond

ucte

d. A

n in

terp

retiv

e

phen

omen

olog

ical

app

roac

h w

as

take

n to

exp

lore

the

expe

rienc

es

of y

oung

peo

ple

with

type

1dia

bete

s and

thei

r par

ents

.

20 W

hite

Brit

ish

peop

le (9

mal

e, 1

1

fem

ale)

age

d 13

-16

year

s atte

ndin

g a

paed

iatri

c cl

inic

in N

orth

-Wes

t Eng

land

and

27 p

aren

ts (7

mal

e, 2

0 fe

mal

e).

The

fem

ale

pare

nt/g

uard

ian

alon

e to

ok p

art

in 1

3 in

terv

iew

s, an

d bo

th p

aren

ts

took

par

t in

seve

n in

terv

iew

s.

118.

Spen

cer

et

al.(1

18)

2013

U

K

Res

earc

h To

exp

lore

ado

lesc

ents

’ and

par

ents

expe

rienc

es o

f liv

ing

with

Typ

e 1

diab

etes

from

an

inte

rpre

tive

phen

omen

olog

ical

per

spec

tive

In-d

epth

inte

rvie

ws w

ere

cond

ucte

d, u

nder

pinn

ed b

y

inte

rpre

tive

phen

omen

olog

y

20 a

dole

scen

ts (1

3-16

, 9 m

ale,

9 fe

mal

e)

with

Typ

e 1

diab

etes

from

a d

iabe

tes

clin

ic in

Nor

th W

est E

ngla

nd, a

nd 2

7 of

thei

r par

ents

119.

Tho

rpe

et

al(1

19)

2013

U

S Sy

stem

atic

revi

ew

O

ne d

atab

ase

was

sear

ched

and

129

artic

les m

et c

riter

ia fo

r

incl

usio

n.

Patie

nts w

ith ty

pe 1

or 2

dia

bete

s and

no

rest

rictio

ns o

n ag

e.

Page

97

of 1

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s Car

e

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69

120.

Tie

rney

et

al.(1

20)

2008

U

K

Res

earc

h

To e

xplo

re p

atie

nts’

resp

onse

s to

deve

lopi

ng a

nd m

anag

ing

cyst

ic fi

bros

is-r

elat

ed d

iabe

tes a

nd to

cont

rast

thei

r vie

ws w

ith th

ose

of

indi

vidu

als w

ith ty

pe 1

dia

bete

s

mel

litus

.

Sem

i-stru

ctur

ed te

leph

one

or

face

-to-f

ace

inte

rvie

ws w

ere

cond

ucte

d w

ith p

atie

nts w

ho

had

cyst

ic fi

bros

is-r

elat

ed

diab

etes

or t

ype

1 di

abet

es

mel

litus

, dur

ing

whi

ch, t

hey

disc

usse

d di

agno

sis

and

man

agem

ent o

f dia

bete

s.

Fram

ewor

k an

alys

is w

as

empl

oyed

to id

entif

y th

emes

and

to c

onsi

der s

imila

ritie

s and

diff

eren

ces b

etw

een

the

two

grou

ps.

Parti

cipa

nts w

ere

deriv

ed fr

om a

larg

er

sam

ple

of p

atie

nts t

akin

g pa

rt in

a

ques

tionn

aire

-bas

ed st

udy

com

parin

g

epis

odes

of h

ypog

lyca

emia

and

qua

lity

of li

fe b

etw

een

patie

nts w

ith C

FRD

and

T1D

M. P

artic

ipan

ts h

ad to

be

18-6

0,

diag

nose

d w

ith d

iabe

tes f

or a

t lea

st 3

mon

ths a

nd b

eing

trea

ted

with

insu

lin.

23 in

terv

iew

s wer

e co

nduc

ted

with

11

CFR

D (5

mal

e, 6

fem

ale)

and

12

T1D

M

(6 m

ale)

par

ticip

ants

.

Page

98

of 1

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s Car

e

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121.

Vac

hon

et

al(1

21)

2007

U

SA

Res

earc

h To

des

crib

e th

e de

velo

pmen

t and

impl

emen

tatio

n of

a m

ultif

acet

ed

prog

ram

in a

n in

ner-

city

hea

lthca

re

cent

re d

esig

ned

to im

prov

e ac

cess

to

care

and

em

pow

er p

atie

nts t

o ta

ke a

mor

e ac

tive

role

in m

anag

ing

diab

etes

.

Des

crip

tion

of D

iabe

tic R

ewar

ds

Issu

ed V

ia E

very

one

(DR

IVE)

,

a m

onth

ly o

pen-

acce

ss, m

ulti-

stat

ion

grou

p vi

sit p

rogr

am

base

d in

an

econ

omic

ally

depr

ived

nei

ghbo

urho

od w

est

Chi

cago

. The

gro

up v

isit

form

at

inte

nded

to m

axim

ize

prov

ider

prod

uctiv

ity, i

ncre

ase

the

clin

ic's

capa

city

to se

e a

grea

ter

num

ber o

f pat

ient

s, pr

ovid

e

patie

nts a

setti

ng in

whi

ch to

lear

n m

ore

abou

t dia

bete

s,

nutri

tion

and

self-

man

agem

ent a

nd to

leve

rage

the

inte

ract

ions

am

ong

patie

nts i

n gr

oup

mee

tings

to

help

pro

mpt

cha

nges

in th

eir

self-

man

agem

ent t

hrou

gh p

eer

influ

ence

and

exp

erie

nce.

DR

IVE

day

parti

cipa

nts n

=294

, pat

ient

s

with

dia

bete

s who

hav

e no

t atte

nded

a

DR

IVE

day

n=44

3

Page

99

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71

122.

Vik

lun

&

Wik

blah

(1

22)

2009

Sw

eden

R

esea

rch

To

exp

lore

teen

ager

s’ p

erce

ptio

ns o

f

fact

ors a

ffec

ting

deci

sion

-mak

ing

com

pete

nce

in d

iabe

tes m

anag

emen

t.

Qua

litat

ive

inte

rvie

ws w

ith

teen

ager

s with

type

1 d

iabe

tes

shor

tly a

fter t

hat c

ompl

eted

an

empo

wer

men

t edu

catio

n

prog

ram

me.

Inte

rvie

ws w

ere

anal

ysed

usi

ng q

ualit

ativ

e

cont

ent a

naly

sis.

31 te

enag

ers (

17 g

irls a

nd 1

5 bo

ys) w

ith

type

1 d

iabe

tes,

aged

12–

17 y

ears

.

123.

Vik

lund

et

al(1

23)

2007

a Sw

eden

R

esea

rch

To d

eter

min

e th

e ef

fect

s of a

n

empo

wer

men

t pro

gram

me

on

glyc

aem

ic c

ontro

l and

em

pow

erm

ent.

Ran

dom

ised

pre

-/pos

t-tes

t

desi

gn w

ith re

peat

ed m

easu

res.

The

empo

wer

men

t edu

catio

n

prog

ram

me

cons

iste

d of

six

2-h

grou

p se

ssio

ns. M

ain

outc

ome

mea

sure

s: H

bA1c

,

empo

wer

men

t and

par

enta

l

invo

lvem

ent.

Thirt

y-tw

o te

enag

ers w

ith T

ype

1

diab

etes

(12-

17 y

ears

), in

clud

ing

invo

lvem

ent f

rom

par

ents

.

Page

100

of 1

36

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s Car

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72

124.

Vik

lund

et

al(1

24)

2007

b Sw

eden

R

esea

rch

To e

valu

ate

whe

ther

dia

betic

teen

ager

s

parti

cipa

ting

in a

gro

up e

duca

tiona

l

prog

ram

me,

‘the

scho

oner

pro

gram

me’

,

diff

er fr

om n

on-p

artic

ipan

ts in

atti

tude

s

tow

ards

dia

bete

s and

self-

care

, and

to

eval

uate

the

impa

ct o

n th

e at

titud

es,

HbA

1c a

nd tr

eatm

ent o

f the

prog

ram

me.

Inte

nsiv

e ed

ucat

iona

l

prog

ram

me

run

on a

saili

ng

ship

. The

stud

y us

ed a

‘ref

eren

ce’ g

roup

and

com

pare

d

attit

udes

tow

ards

dia

bete

s and

self-

care

, gly

caem

ic c

ontro

l and

look

ed a

t the

role

of s

ocia

l

netw

orks

.

A to

tal o

f 90

youn

g pe

ople

(mea

n ag

e

15.5

yea

rs (S

D =

0.9

) atte

nded

the

prog

ram

me

Page

101

of 1

36

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73

125.

Vis

senb

erg

et a

l(125

)

2016

Res

earc

h To

stud

y w

heth

er th

e gr

oup-

base

d

inte

rven

tion

Pow

erfu

l Tog

ethe

r with

Dia

bete

s (PT

WD

) cha

nged

soci

al

supp

ort a

nd so

cial

influ

ence

s, an

d

whi

ch e

lem

ents

of t

he in

terv

entio

n

cont

ribut

ed to

this

.

Qua

litat

ive

Proc

ess e

valu

atio

n.

Soci

al n

etw

ork-

base

d

inte

rven

tion

PTW

D d

evel

oped

,

whi

ch a

imed

to st

imul

ate

soci

al

supp

ort f

or se

lf-m

anag

emen

t

and

dim

inis

h hi

nder

ing

soci

al

influ

ence

s on

self-

man

agem

ent

amon

g so

cioe

cono

mic

ally

depr

ived

pat

ient

s. Th

e

inte

rven

tion

grou

p (I

G) w

as

com

pare

d w

ith a

stan

dard

grou

p-ba

sed

educ

atio

nal

inte

rven

tion

(con

trol g

roup

,

CG

). Q

ualit

ativ

e in

-dep

th

inte

rvie

ws w

ith p

artic

ipan

ts a

nd

inte

rvie

ws w

ith g

roup

lead

ers

wer

e co

nduc

ted.

51 in

-dep

th in

terv

iew

s wer

e ca

rrie

d ou

t

(par

ticip

ants

n=2

7, g

roup

lead

ers n

=24)

126.

Wal

ler

et

al(1

26)

2005

U

K

Res

earc

h To

ass

ess a

dole

scen

ts’ a

nd th

eir

pare

nts’

vie

ws o

n th

e ac

cept

abili

ty a

nd

desi

gn o

f a n

ew d

iabe

tes e

duca

tion

prog

ram

me.

Focu

s gro

up st

udy.

Tw

enty

-fou

r chi

ldre

n an

d 29

par

ents

atte

nded

one

of e

ight

sepa

rate

focu

s

grou

ps.

Page

102

of 1

36

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s Car

e

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74

127.

Wei

nger

K(1

27)

2003

U

SA

Rep

ort/

rese

arch

Des

crip

tion

of d

iffer

ent g

roup

med

ical

visi

t mod

els

Sum

mar

y of

seve

n pa

pers

look

ing

at fi

ve g

roup

med

ical

visi

t mod

els

n/a

128.

Wile

y et

al(1

28)

2014

A

ustra

lia

Res

earc

h To

des

crib

e th

e ex

perie

nce

of d

iabe

tes

educ

atio

n fr

om th

e pe

rspe

ctiv

e of

youn

g ad

ults

with

type

1 d

iabe

tes.

Surv

ey q

uest

ionn

aire

and

focu

s

grou

p st

udy.

150

resp

onde

nts t

o th

e su

rvey

ques

tionn

aire

(30.

5% a

ged

18–2

4 ye

ars)

and

33 p

artic

ipan

ts in

the

focu

s gro

ups

(mea

n ag

e w

as 2

5.1

year

s).

129.

Will

iam

s

&

Pace

(129

)

2009

C

anad

a Sy

stem

atic

revi

ew

To d

eter

min

e w

heth

er p

robl

em b

ased

lear

ning

(PB

L) is

an

effe

ctiv

e

educ

atio

nal s

trate

gy in

chr

onic

dis

ease

man

agem

ent.

Inte

grat

ive

liter

atur

e re

view

-

five

data

base

s wer

e se

arch

ed

and

thirt

een

pape

rs w

ere

incl

uded

in th

e re

view

.

Six

stud

ies i

nvol

ved

child

ren,

adol

esce

nts o

r adu

lts w

ith d

iabe

tes

130.

Won

g S

al(1

30)

2015

C

anad

a R

esea

rch

To re

port

whe

ther

gro

up m

edic

al v

isits

(GM

Vs)

for c

hron

ic c

ondi

tions

, hav

e

tang

ible

ben

efits

for p

rovi

ders

and

patie

nts

Des

crip

tive

stud

y in

clud

ing

in-

dept

h in

terv

iew

s with

pat

ient

s

atte

ndin

g an

d pr

ovid

ers

faci

litat

ing

GM

Vs a

nd d

irect

obse

rvat

ion.

Fiv

e pr

imar

y ca

re

prac

tices

in ru

ral t

owns

and

four

Firs

t Nat

ions

com

mun

ities

parti

cipa

ted.

Inte

rpre

tive,

them

atic

ana

lysi

s was

cond

ucte

d.

34 p

rovi

ders

and

29

patie

nts w

ere

inte

rvie

wed

. Mea

n ag

e of

pat

ient

s was

62 y

ears

old

, mos

tly fe

mal

e an

d m

arrie

d.

The

thre

e m

ost c

omm

on c

hron

ic

cond

ition

s rep

orte

d by

pat

ient

s wer

e

diab

etes

(n =

9),

high

blo

od p

ress

ure

(n

= 8)

and

arth

ritis

(n =

7).

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103

of 1

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131.

Yeo

h et

al(1

31)

2015

U

K

Syst

emat

ic

revi

ew

To re

view

edu

catio

nal,

tech

nolo

gica

l

and

phar

mac

olog

ical

inte

rven

tions

aim

ed a

t res

torin

g hy

pogl

ycem

ia

awar

enes

s (H

A) i

n ad

ults

with

type

1

diab

etes

.

Syst

emat

ic re

view

and

met

a-

anal

ysis

- se

ven

data

base

s wer

e

sear

ched

and

43

stud

ies m

et th

e

incl

usio

n cr

iteria

.

Adu

lts o

ver 1

8 ye

ars.

Page

104

of 1

36

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Page 105 of 136

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Appendix 4

Table 3: Illustrative quotes

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CMOC 1 When young adults, who do not normally have the opportunity to share experiences with

peers living with diabetes, find a space to connect and share openly with others (C), this

might make it more likely for patients to feel supported (M) and comfortable (M), and could

in turn lead to perceptions of increased understanding and learning (O). (13, 21, 67, 74, 77,

99, 101, 115, 130)

Most patients (87%) indicated they had learned from fellow patients, fellow

patients helped them to understand the information better (75%), and they

learned to ask questions (42%) (Table 6). (77)

Group programmes of patient education have the advantage of stimulating

interactions among participants, which enhance the efficacy of education:

peer listening improves learning, while the opportunity to share one’s

experience about the disease with others provides an effective psychological

support [6]. Interactive formats are thought to be superior to more

traditional, lesson-style group programmes, because they are more effective

in enhancing interaction among patients [7]. (74)

Teen Power offered teens and caregivers the opportunity to negotiate this

balance through dialogue with others who share similar life experiences. In

this way, the group promoted social support and networking. Indeed, this was

the first opportunity for the majority of participants to meet other diabetic

teens and to dialogue with a young adult diabetes mentor. Effective diabetes

management can be particularly difficult for teens at a young developmental

stage. The Teen Power intervention offers these adolescents specific activities

and workshops, as well as an opportunity to learn from their peers. (13)

A self administered satisfaction survey from patients indicated that 96% felt

more supported, 82% better understood information compared to during

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regular appointments, 82% felt more comfortable asking questions, 88%

would recommend Team Clinic to others, and 84% wanted to attend another

Team Clinic. (99)

Surrogate question answering Wider evidence suggests that patients will often

be reluctant to ask questions within a one-toone consultation. Within a group

context they may find that a more active participant is more able to vocalise

their own concerns. Patients therefore become vicariously exposed to

information that would not otherwise be forthcoming. (9)

As an SMA lasts longer than an individual appointment and mutual

interaction is actively sought, SMAs may provide more opportunity to discuss

relevant diabetes-related topics and to invite patients to raise current health

issues themselves. In this way, SMA patients learn from each other and pick

up information about topics they were afraid to ask or never thought of

asking. We therefore expect that the children and the adolescents feel more at

ease and more stimulated to contribute to the conversation when they hear

their fellow patients talking about a certain topic. (101)

In the majority of the patients, their fellow patients also helped them to

understand the information better, which is highly relevant given the complex

and multidimensional nature of the disease. Yet, contrary to expectations, in

only a minority of the patients the presence of others helped them to ask

questions.(101)

The participants’ conversational contributions in the different types of visits

suggest that there is more balance in the input of the different participants

during SMAs. This could, however, be ascribed primarily to the higher

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conversational contribution of the team members and does, so far, not

indicate that SMAs provide a more safe environment for child patients to

speak up. In addition, the fact that in SMAs silences lasted half as long as in

individual visits, may suggest a more effective use of time, but may also

diminish opportunities of communicating empathy and providing space,

which are both strongly related to silences [18]. (101)

A programme that would engage young people was stated as being essential.

The use of practical sessions was considered to be very important as it was

felt that young people learned more by doing than just talking. Lectures about

the subject areas to be addressed were discouraged with many adolescents

stating that they would simply ‘turn off’ or not return after the first session.

Group discussion, practical demonstrations and fun activities were identified

as the most fruitful means of delivery for this age group (14)

Rather than repeating health education messages (e.g., reasons for a high

HbA1c) across several individual visits, providers taught to the whole group

at once, witnessed reinforcement of key messages by patients sharing their

own experience and, in addition, reported more opportunities for in-depth

patient–provider interactions. (130)

According to the providers, patients react more openly during SMAs and

thereby facilitate this learning process. (77)

Furthermore, parents (37.5%) want their child to attend SMAs in order to

enhance their relationship with other patients with type 1 diabetes. (77)

Group education classes stimulate learning by allowing adults to incorporate

their own experiences with diabetes into class discussion and, thus, actively

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engage in the learning process (5). (115)

Both learning communities and SMAs foster increased knowledge, self-

efficacy, a greater understanding of the medical condition, and coping skills.

(21)

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CMOC2 When group interactions enable peer support, young adults who feel more isolated,

experience negative perceptions of self-management and/or face diabetes-related distress (C),

may draw encouragement from each other (M), which could subsequently lead to more

confidence and motivation in their self-management (O). (67, 77, 81, 130)

Patients attending GMVs reported increased confidence and skills in

managing their health within their personal and social context. One patient

stated: “… you come out of the group feeling much more self-confident …

you’ve got your batteries recharged and you can really go till the next group

… it’s [GMV] more motivating … you want to do more yourself and rely less

on others … but then you always realize there’s others out there to help you if

needed.” (Patient #16) (130)

As well as helping to raise their self-esteem, and overcome feelings of

isolation, patients talked about how the group interactions had also enhanced

their capacity to comprehend and assimilate information during the course.

(67)

“Group was the one place I could really open up and talk about my diabetes

and feel good about it.” (81)

Openness like this encouraged the group to talk about relationships and

sharing responsibilities. (70)

According to the parents (37.5%), SMAs are only useful when children act

openly and are committed, not when SMAs are seen as unpleasant. (77)

For young adults who experience denial towards their diagnosis – group

clinics can provide a safe space to discover what it means to live with

diabetes. (81)

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CMOC 3 Peer support in group clinics for young adults who experience their diagnosis and self-

management as socially stigmatising (C), may help instil a sense of normalcy (M), which

could lead to re-thinking self-monitoring and management in social settings (O). (9, 13, 31,

51, 65, 67, 70, 90)

Injecting insulin was not a value-neutral medical procedure but a social

practice which people with diabetes deemed appropriate or inappropriate in

different contexts. (51)

Also, compared to individual treatment, practice of key diabetes management

skills within the social context of a therapeutic group may be more effective

for generalization of the skills adolescents need to apply in peer social

settings. (90)

A review of behavioral interventions found that almost one half of the

treatments for adolescents with diabetes were delivered in group formats

(Hampson et al., 2000). Interactions with peers who share the experience of

diabetes, which may be more difficult to arrange through individual therapy,

may foster a sense of normalcy (Citrin, Zigo, LaGreca, & Skyler, 1982). (90)

SMAs help patients break from their cognitive dissonance pertaining to their

illness, and coming out of concealing or normalizing their conditions [29].

(65)

[…] the selfcare behaviours that they are being encouraged to pursue are

likely to feel at odds with the prevailing social norms for their age group (31)

In this context involvement of patients in their own monitoring, particularly

where this requires hands-on engagement with monitoring equipment, may be

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both a practical and symbolic way of getting them to start to engage with

their own management. (9)

For example, teens who openly engaged in diabetes management behaviors

within the group setting appeared to have a positive influence on peers who

were reluctant. (13)

Some adolescents reported that they had fewer objections to measuring their

glucose values and injecting insulin in public after the intervention [peer-

group support and problem-solving training]. (70)

[…]interactions not only enhanced the depth and breadth of learning which

took place, but also, at a deeper and more fundamental level, they led to

transformations in course participants’ perceptions of, and orientations to

risk (and risk-taking), and, associatedly, their conversion into insulin dose-

adjusting subjects. (67)

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CMOC4 Where group clinic bring together participants who have common characteristics or shared

experiences (C), it is assumed that a sense of affinity is more likely to emerge between group

members (M), which could lead to increased sharing and sustained interest as participants

will be able to relate to each other’s experiences (O). (21, 23, 77, 107, 115)

[…] patients can benefit from attending a group which offers an accumulated

pool of experience. However, this consideration needs to be balanced against

that of ensuring that group sizes are not so large that opportunities for

interactions between participants, or for the daily review of individual data,

are compromised, as this may reduce a SEP’s effectiveness. (67)

For parents (62.5%), SMAs should preferably be attended by patients with

similar ages, attitudes, problems, and types of insulin treatment. (77)

[intended to ensure topics of interest to all participants will be covered in

full.]

To maximize the benefit of group education, participants must be able to

relate to each other’s shared experiences to inform or influence their own

behavior (5). (Smaldone, Ganda et al. 2006)

SMAs for adolescents who continue to meet together are similar to those that

participate in a learning community. The group bonding and camaraderie

that develop over time can lead to identity within the group, and give

adolescents the opportunity to share common struggles (Eisenstat et al.,

2012). (21)

They did not perceive age-banding as having the function of allowing

interaction with peers in the clinic setting. This is supported by the findings

from a qualitative study carried out by Datta (2003). She suggested that older

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adolescents and young adults are not generally comfortable with shared

activities, and that these have limited attractiveness, especially when

arranged by staff. (30)

During SMAs with adolescents, the team and group members address

transition issues over time, making the process less stressful. (Davis and

Vitagliano 2015)

For adolescents, an SMA can be seen as a step to independence. As one

parent reacted: “My influence during medical visits is gradually decreasing.

This is very important”. (77)

Difficulties in delivering the intervention particularly occurred when sessions

had groups of participants with a wide age range or group numbers were

very small. ‘The first group that we ran had two girls and a boy and the boy

was at the younger end of the teenage years and the girls were at the older, it

was unfortunate because we didn’t have that many patients as part of the

study so it was very difficult then to get the groups sorted out so we kind of

had to put them together. […] He was just a bit of a silly boy in that…I don’t

mean horribly, he was lovely, but just kind of played the fool a little bit

whereas the girls were older and a similar age and a lot more grown up

about it all.’ (Site educator) (107)

According to an equal number of parents, the topics discussed during an

individual appointment are more tailored to the individual patient. If their

child experiences unusual problems, these problems are more easily

addressed during an individual appointment. It is important to parents that

their children receive sufficient individual attention from health care

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providers during an SMA. (77)

Our opinion is that the time built into our SMA model for individual attention

during goal setting, history and physical, and wrap-up allowed for flexibility

to personalize group sessions based on recurrent themes among the

individuals, leading to these improvements. (40)

At times there were common issues and therefore group discussion of blood

glucose levels were relevant but on the whole this component became less

rather than more important as time went on. (12)

There were a few patients who thought if the GMV had too many people that

patients’ time was not used appropriately because they needed to listen to too

many patients’ health concerns. (130)

SMAs were also valued negatively by some parents (25%) when patients are present

who do not want to participate or when patients do not interact with each other. (77)

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CMOC5 In contexts where young adults have previously experienced a collaborative, helpful and

respectful relationship with their clinicians, characterised by mutual understanding (C), it is

more likely they will feel safe in exposing vulnerabilities (M) and that they will perceive

added value and usefulness from interactions with services providers who know them well

(M), which may lead to increased engagement with the service (O) and increased attendance

(O). (29, 30, 55)

Meeting service providers at appointments with whom young adults had a

relationship reinforced their engagement with the clinic, indicating that a

reciprocal relationship existed between relationships and engagement. In

addition, engagement positively influenced young adults’ diabetes-related

perceptions and behaviours, preventing a cycle of inadequate self-

management, distress, and non-attendance from developing.

‘If you were having a tough time with your bloods they’ll schedule times to

ring you over a few weeks and they’ll keep in contact with you until you have

it under control again, which is great like, so you always have somebody

there.’ Young adult 6, female, age 26, 50–75% attendance (55)

By continuing to deliver diabetes services to young adults using existing

models, high rates of clinic non-attendance are likely to persist, as the

findings of this study suggest that young adults actively respond only after

experiencing collaboration with, and support from, service providers. (55)

Once a relationship existed, experiences with supportive and understanding

service providers made young adults more likely to attend the diabetes clinic

despite feelings of distress, due to the knowledge and confidence they had that

they would benefit from attending.(55)

Other participants, who relied more on secondary care services, described a

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level of disengagement because of the lack of staff continuity, characterised

by feeling like a passive participant in consultations and questioning the

benefits of the advice given or of attending appointments: … [Y]ou’re telling

this doctor about your diabetes, and the next time, you’re telling another

doctor and they just preach to you the same things … If there’s not a patient–

doctor build-up, then you think, ‘Well, why should I bother coming?’ (Female,

22 years) (30)

Participants highlighted continuity of contact as helpful:

… [T]he trust and everything is already there … If not, that’s a slight

resentment: someone walks through the door, and 5 minutes later, they’re

telling you to cut this out and do that. It’s like, ‘Who are you to tell me?’

(Male, 21 years)

She was there on the end of the phone … I could talk to her and she knew the

basic background of my family, how I had become pregnant, everything – that

I’d lost a baby beforehand … and she was with me through that as well, so

she was brilliant … just listened and helped. (Female, 22 years) (30)

The data suggest that continuity of contact would allow a young person to feel

that their situation was understood without the need to retell their history.

This would appear to result in an increased level of trust, perceived

usefulness of contact, ease with which the young person can negotiate the

practicalities of clinics, make telephone contact between clinics and the

amount of rapport within the relationship. (30)

The quality of the relationship with the health care professional was seen to

be essential. The style of the consultation and the attitude of the health care

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professional working with the young person were seen to be at the core. This

involved seeing the same person and developing trust and rapport as well as

including family, friends and partners when required, in a manner that was

flexible and responsive. (29)

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CMOC6 An increased emphasis on positive aspects of self-management and developmentally tailored

attention to sensitive emotional needs over other priorities, for young adults who remain

ambivalent about their role as diabetes patients (C), may help young adults slowly build self-

esteem (M) and take a more active role in their self-management (O). (14)

A majority of our time, however, was devoted to focusing on the emotional

and motivational needs of the students, which are equally important. As one

teen remarked in one of the meetings, “We know about diabetes care, we

learned that at the hospital. If we don’t want to take care of ourselves, no one

is going to make us do it. Only we will, when we are ready.” (81)

Participants also highlighted the importance of having a programme which

could inspire and motivate them to take an active role in their diabetes

management because they want to, rather than because they have to. (113)

The Teen Power curriculum was designed to promote the development of

health promoting behaviors among Type 1 diabetic teens by simultaneously

targeting medical adherence and psychosocial barriers in order to optimize

positive treatment outcomes.(13)

Ambivalence appears to be an issue and it seems ‘clinical styles that are

respectful, acknowledge choices and ambivalence and do not increase

resistance seem to be logical’.33 Interventions are empathic,

nonconfrontational, use reflections, develop self-efficacy and highlight

discrepancies from the young person’s perspective. (29)

Sensitive use of language is also essential; for example, we can discuss

‘choices and behaviours’ rather than ‘problems or issues’ unless labelled by

the young person in that way. (29)

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[…] an adolescent at a stage of development prior to the development of

more abstract styles of thinking would not find discussions about the long-

term complications of diabetes meaningful. Instead he or she might feel

confused and overwhelmed and may withdraw as a means of self-protection.

(29)

[…] during regular follow-up visits, young patients often behave in a passive

way to back out of their responsibility to take care of their disease(101)

the effect this has on their engagement with services can be hard for health

care professionals to manage as it can result in the young person oscillating

between engagement and interest in diabetes and detachment and disinterest.

(29)

It is suggested that this results in blurred social boundaries where young

people in these age groups are sometimes considered as children and

sometimes considered as adults, rather than being allowed to flourish in their

own right, somewhere in-between. As a result, the oscillation, transaction and

ambiguity, normative and necessary for development, become labelled as

problematic, as they do not clearly fit with the social constructions of

childhood or of adulthood, and problem saturated stereotypes of young

people are allowed to dominate. (31)

Doctors often spend much time and effort trying to achieve control, minimise

disease progression, and reduce complications of chronic illness. Young

people, on the other hand, are far more interested in achieving the

developmental tasks of adolescence.’ They conclude that broadening the

disease-focused perspective would achieve better health outcomes and reduce

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the conflict between the perspective of the professional and the young person.

(29)

They could also have additional, specific psychological vulnerabilities to

manage, associated with the demands of diabetes, such as eating problems,

social isolation, fear of stigma, poor intimate relationships, depression, poor

self-efficacy and low perceived control (29)

“When I went into college I think as most people do, diabetes became the last

thing on my mind, I didn’t care, I didn’t want to know about it.” Young adult

6, female, age 26, 50–75% attendance (55)

‘He tells me he plays football and goes to the gym. He doesn’t make any

special preparation for doing sports. Mum says he takes Lucozade with him.

Asghar insists he doesn’t and then Mum says he drank a whole bottle before

football. She gets frustrated with him “What about the time I chased after you

because you’d taken four bottles!”“I was taking them for my mates” Mum

looks disgruntled - “They’re too expensive to give them to your mates”.’

Field notes from home visit to Asghar, age 16, type 1 diabetes for 7 years,

IMD score 67.1 Lucozade is a commercial carbonated carbohydrate drink

which many participants used to treat hypoglycaemic attacks, but which is

also marketed as a sports drink. By handing out bottles to his friends, Asghar

may have successfully de-medicalised his treatment and achieved social gain,

but this trade-off had a very different social meaning for his mother, who was

struggling to feed a family of six on state benefits. (51)

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CMOC7 With time people who engage in group sessions (C), make continuous judgments about the

added value of these sessions to their own individual needs (M), which leads them to decide

whether they will keep engaging with the group (O). (9, 12, 70, 74, 77, 98, 101, 109)

However, while patients, in their follow-up interviews, highlighted some

benefits to be gained from attending follow-up sessions in a group, most

indicated a preference and need for one-to-one support. This included M7,

who described group-based follow-ups as mitigating opportunities for

patients to: “talk about their own individual circumstances ... everyone’s an

individual and I think everyone has individual needs... and events happening

in their lives” (M7.3). Several patients also expressed dissatisfaction with

reviews of blood glucose readings at six week follow-up sessions. While

patients had collected blood glucose data for six weeks, the requirement for

all patients’ readings to be reviewed meant there was only time to examine

their most recent results. M14, for instance, described how educators had

reviewed blood glucose readings that he had gathered over the preceding two

or three days, which, he suggested, could result in a focus applied to an

unrepresentative sample of results collected over “a very small period of that

six weeks”. (98)

Self-help groups can improve the psychological status and health-related QoL

of patients [10–12], but fail to modify metabolic control [10, 12]. In fact, the

format of the self-help group is not efficient for the transmission of structured

knowledge, which is also required for the improvement of metabolic control

[3]. Interactive group programmes which also include the provision of

technical information by health professionals in a more structured format,

with a pre-defined schedule of topics, could be more effective in the

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improvement of metabolic control [13]. (74)

Parents (25%) also value the privacy of an individual visit, particularly when

discussing personal problems. (77)

[…] some patients also identified themselves as not wanting to attend more

Gmvs because they did not want to talk about their issues, nor hear other

patients’ issues in a group. (130)

Any instance in which such public disclosure is bad for the patient may result

in negative outcomes. For some patients who already have high levels of self-

efficacy and who are private by nature, the SMA environment may prove to be

stressful in ways that private clinical encounters are not. (65)

A relevant proportion of patients invited did not attend group sessions. A low

participation rate seems to be common for long-term educational

programmes, particularly when dealing with established cases. (74)

In other accounts, patients sought and/or expressed a preference for

individualised and tailored support, provided by specialists, that was

responsive to changes in their personal circumstances and lifestyles. For

example, F2 described having needed, and received, regular and intensive

educator support after she became pregnant, to review and change quick-

acting ratios and basal insulin doses, to control unstable and fluctuating

blood glucose readings. (98)

Most of these participants reported that they rarely met outside the group and

interest in the group appeared less important as time went on. Over time for

many participants there was a shift from working and learning with others to

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solving my issues and the need to focus on me again. “Not really I mean at

this stage I’m not sure how much more group work would actually be of

benefit to me” (P9-096 12 months). “I think I find now after all this time the

group session there’s not as much said as before, because it’s the same kind

of people having the same kind of problems. And you kind of think now it

might be better off just to speak to the expert rather than listen to - again like

in the beginning it was - you learnt an awful lot from everybody else, but now

I don’t think so much now"(P13-100 12 months). (12)

Most participants reported that the group education sessions became less

important over time as participants required individual one to one responsive

practical support and advice available as needed, focusing on their unique

concerns. These findings are substantiated in other studies [8,48,49]. In

particular, participants in this study reported that they wanted timely access

to the right health professional when they were making real efforts to change

but were being hampered by a transient problem they did not know how to

manage. The need for timely support to resolve crises that threaten patients’

ability to self manage has also been highlighted by other writers [33,36]. (12)

To add, although patients did not mind the extra time investment and they

would recommend others to participate in an SMA as well, only half of them

would choose an SMA again next time. This latter finding may suggest that

SMAs and individual visits complement rather than replace each other, and

may therefore need to be offered interchangeably to guarantee high quality

diabetes care as well as visit adherence.(101)

The present study shows that group interventions for adolescents with type 1

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diabetes are effective when combined with individual consultations.

Discussing certain personal issues may feel more appropriate in an

individual consultation, while other issues may be more suitable for

discussion with peers in groups.(70)

Our qualitative study adds to Smith et al’s concerns about promoting group-

based support in diabetes clinical practice, particularly if this support is

offered in isolation from other types of inputs and interventions. We have also

provided insights into why group-based follow-ups may not necessarily be a

popular or effective approach – albeit in this instance, through a focus on

type 1 diabetes patients. Specifically, we have shown that a group-based

approach may be incompatible with patients’ need for individualised input

from health professionals post-course, to accommodate their specific and

personal experiences of applying their treatment regimens in everyday life.

(98)

There were few long-term studies examining the effectiveness of group

medical visits for diabetes care. Fifteen of the 26 studies were 12 months or

less in duration, and 6 studies were up to 2 years in duration. The study with

the longest duration followed patients for 5 years after the intervention.

Therefore, the long-term or sustainable outcomes of group medical visits are

unclear, and it is difficult to know if the outcomes were maintained for a

substantial length of time after the intervention. (54)

A significant proportion of those invited decline, largely because they do not

recognise benefits against the perceived advantages of an individual

consultation. (9)

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However, effort should be put into ways of improving access to the

intervention. First, more personalised information about the intervention and

advantages of participation could have been presented to the adolescents and

parents. Second, more effort might have been put into the issue of motivating

them to be willing to meet with others unfamiliar to them. Third, using

incentives and various forms of rewards for participation might encourage

participation. (70)

When comparing the two forms of SMS [self-management support], we found

that the ATDM [automated telephone disease management] model not only

reached a greater proportion of the target population than the group medical

visit model, but it also yielded particularly high rates of engagement for those

with limited literacy and limited English proficiency. For health system

planners and practitioners in health education and health promotion, this

suggests that the relative accessibility and targeting of the ATDM technology,

combined with its proactive nature and hierarchical logic, can provide a

strategy to reverse the inverse care law and reduce health care disparities.

(109)

Most patients (n = 45) appeared to be satisfied with the SMA directly after

having attended the SMA (M = 4.22, SD = 0.81). Their satisfaction tended to

decrease after 3 months (M = 3.76, SD = 1.15; t (28) = 1.94, P = 0.06) (77)

Perversely those least likely to communicate or engage in a group setting may

be the very ones who are most need supplemental individualised care. (9)

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CMOC8 For young adults who have negative perceptions about their ability to self-manage or who

face diabetes-related distress (C), fear they may be diagnosed with further health problems

(M), may lead them to disengage from the service (O). (15, 43, 55)

Even with the moderate intensity of our programme, a certain number of

adolescents chose not to participate or were lost during follow-up, giving the

intervention a completion rate of 39 of 55 patients, or 71%. Adolescents lost

during follow-up in both the intervention and control groups had significantly

lower scores on self-reported self-esteem and general health in the generic

measurement, a worse perception of diabetes-related impact, and higher

HbA1c. These adolescents appeared to have less self-confidence and

perceived a greater impact of the disease than did the other participants. This

suggests that there might be problems in reaching adolescents with these

particular problems. (43)

Dissatisfaction among young adults with the perceived quality of their self-

management was described by some young adults as a motivator, and by

others as a significant barrier, to clinic attendance. ‘I should be going to the

clinics, but the fear that I have is that they’re [service providers] going to

turn around and go well you’ve the signs of diabetes eye disease or your

kidney function isn’t as good as it should be; that’s what terrifies me.’ Young

adult 7, female, age 22, <50% attendance (55)

Take up was particularly low for those young people with the highest HbA1c.

Those who attended had significantly lower mean baseline HbA1c scores than

those who did not attend (9.52% (81 mol/mol) vs 10.33% (89 mmol/ mol),

p<0.01). (15)

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Previous research has highlighted that seemingly innocuous behaviours have

been interpreted as intrusive and an accusation of incapability by adolescents

when delivered by parents (Seiffge-Krenke et al., 2013). It is possible that

these behaviours elicit the same reaction when conveyed by peers. (28)

Close friends that can take a supportive role in a measured way are seen as

helpful but those that worry about diabetes or overly monitor the young

person’s self-care behaviours, are seen as unhelpful. (31)

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References

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18. Coffen RD, Dahlquist LM. Magnitude of type 1 diabetes self-management in youth: health care needs diabetes educators. Diabetes Educator. 2009;35(2):302-8. 19. Colson S, Cote J, Gentile S, Hamel V, Sapuppo C, Ramirez-Garcia P, et al. An Integrative Review of the Quality and Outcomes of Diabetes Education Programs for Children and Adolescents. Diabetes Educator. 2016;42(5):549-84. 20. Davidson M, Penney ED, Muller B, Grey M. Stressors and self-care challenges faced by adolescents living with type 1 diabetes [corrected] [published erratum appears in APPL NURS RES 2004 Aug;17(3):221]. Applied Nursing Research. 2004;17(2):72-80. 21. Davis LM, Vitagliano CP. Shared Medical Appointments for Adolescents With Type 1 Diabetes Mellitus: Important Learning Communities. Journal of Pediatric Nursing. 2015;30(4):632-4. 22. Davis AM, Sawyer DR, Vinci LM. The Potential of Group Visits in Diabetes Care. Clinical Diabetes. 2008;26(2):58-62. 23. Day E. Group education for young people with diabetes. Journal of Diabetes Nursing. 2007;11(3):5p-p. 24. Debaty I, Halimi S, Quesada JL, Baudrant M, Allenet B, Benhamou PY. A prospective study of quality of life in 77 type 1 diabetic patients 12 months after a hospital therapeutic educational programme. Diabetes & Metabolism. 2008;34(5):507-13. 25. DeCoster VA, Cummings SM. Helping adults with diabetes: a review of evidence-based interventions. Health & Social Work. 2005;30(3):259-64. 26. Di Battista AM, Hart TA, Greco L, Gloizer J. Type 1 diabetes among adolescents: reduced diabetes self-care caused by social fear and fear of hypoglycemia. Diabetes Educator. 2009;35(3):465-75. 27. Dickinson JK, O'Reilly MM. The lived experience of adolescent females with type 1 diabetes. Diabetes Educator. 2004;30(1):99-107. 28. Doe E. An analysis of the relationships between peer support and diabetes outcomes in adolescents with type 1 diabetes. Journal of Health Psychology. 2016;07:07. 29. Doherty Y, Dovey-Pearce G. Understanding the developmental and psychological needs of young people with diabetes. Implications for providing engaging and effective services. Practical Diabetes International. 2005;22(2):59-64. 30. Dovey-Pearce G, Hurrell R, May C, Walker C, Doherty Y. Young adults’(16–25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health & social care in the community. 2005;13(5):409-19. 31. Dovey-Pearce G, Doherty Y, May C. The influence of diabetes upon adolescent and young adult development: a qualitative study. British Journal of Health Psychology. 2007;12(Pt 1):75-91. 32. Dovey-Pearce G. Improving care for young people: Ask them and they will tell you. Practical Diabetes. 2015;32(4):147. 33. Due-Christensen M, Zoffmann V, Hommel E, Lau M. Can sharing experiences in groups reduce the burden of living with diabetes, regardless of glycaemic control? Diabetic Medicine. 2012;29(2):251-6. 34. Edelman D, McDuffie JR, Oddone E, Gierisch JM, Williams JW. Shared medical appointments for chronic medical conditions: a systematic review. VA-ESP Project #09-010. Durham, NC: Evidence-based Synthesis Program Center; 2012. 35. Ellis M, Jayarajah C. Adolescents' view and experiences of living with type 1 diabetes. Nursing Children & Young People. 2016;28(6):28-34. 36. Elwyn G, Greenhalgh T, Macfarlane F. Groups: A guide to small group work in healthcare, management, education and research: Radcliffe Publishing; 2001. 37. Ersig AL, Tsalikian E, Coffey J, Williams JK. Stressors in Teens with Type 1 Diabetes and Their Parents: Immediate and Long-Term Implications for Transition to Self-Management. Journal of Pediatric Nursing. 2016;31(4):390-6.

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