Helvert Felipe Molina León - g-i-n.net · Diana Patricia Rivera MD, MPH. Helvert Felipe Molina MD, MPH . CINETS Alliance . 2 . Good afternoon. My name is Helvert Felipe Molina, I´m

Disclosure of Interests (last 3 years) Helvert Felipe Molina León

I certify that, to the best of my knowledge, no aspect of my current personal or professional situation might reasonably be expected to affect significantly my views on the subject on which I am presenting

1

Exploring values and preferences of patients and their families for childhood Leukemias and Lymphomas

Clinical Practice Guidelines (CPG).

Concept mapping as an efficient methodological approach.

Diana Patricia Rivera MD, MPH Helvert Felipe Molina MD, MPH

CINETS Alliance

2

Vorführender

Präsentationsnotizen

Good afternoon. My name is Helvert Felipe Molina, I´m a medical doctor and public health professional from Colombia. I work for the National University of Colombia. I would like to share with you today our experience with concept mapping as a tool my colleague DPR and I used to involve patients perspective in the development of the Colombian guidelines for childhood leukemias and lymphomas. This project was funded by the ministry of health and the Science and technology administrative department of Colombia. And was developed by CINETS which is an alliance between three recognized universities of the country.

Outline

1. Background/ Context 2. Methodology: Concept mapping 3. Results 4. How did we use the results? 5. Conclusions

3

Background

4

1 - 4 years Number of deaths

Rate per 100.000 5 - 9 years Number of

deathsRate per 100.000 10-14 years Number

of deathsRate per 100.000

3,5

Malignant neoplasms of lymphoid, haematopoietic and related tissue 218 6,3

Congenital malformations, deformations and chromosomal abnormalities

72 1,6Accidental drowning and submersion 224 2,5

408 4,6

Malnutrition and nutritional anaemias 472 13,7

Accidental drowning and submersion 80 1,8

Malignant neoplasms of lymphoid, haematopoietic and related tissue

308

Land transport accidents 660 7,5

Intestinal infectious diseases 491 14,3 Influenza and Pneumonía 84 1,9 Intentional self-harm (suicide)

Congenital malformations, deformations and chromosomal abnormalities

509 14,8 Land transport accidents 132 3,0

Table 1. Leading causes of death in children less than 14 years old. Colombia 2007-2009

Influenza and Pneumonía 641 18,7Malignant neoplasms of lymphoid, haematopoietic and related tissue

135 3,1 Assault (homicide) 1986 22,6

Vorführender


Leukemias and lymphomas as leading causes of death among children and adolescents younger than 14 yo. Being the first cause of death in the 5 to 9 yo group.

Background

Source: GLOBOCAN 2008. http://globocan.iarc.fr/

5

00 01 02 03 04 05 06 07

Argentina

Brazil

Mexico

Colombia

Spain

U.S.

Germany

Australia

Rate per 100.000 inhabitants

Graphic 1. Incidence rate of neoplasms of lymphoid, haematopoietic and related tissues in children and

adolescents 0-14 y.o. in different countries. 2008

Non-Hodgkin Lymphoma

Hodgkin Lymphoma

Leukemias

00 01 01 02 02 03 03 04 04

Argentina

Brazil

Mexico

Colombia

Spain

U.S.

Germany

Australia

Rate per 100.000 inhabitants

Graphic 2. Age Standarized Mortality rate of neoplasms of lymphoid, haematopoietic and related tissues in children and

adolescents 0-14 y.o. in different countries. 2008

Non-Hodgkin Lymphoma

Hodgkin Lymphoma

Leukemias

Vorführender


Although incidence rate is comparable to other countries, having even lower rates than in some other countries of the region and in developed countries, Colombia has the second highest mortality rate in Latin America for the two diseases: Leukemias and Lymphomas. Colombia. Five years survival rate 50% Mortality within first year 29% Lymphomas 73% Leukemias 42% and over 60%

Background 2009 “Pediatric Leukemia and Lymphomas

Clinical Practice Guidelines (CPG)” PATIENTS INVOLVEMENT CHALLENGES • What does involving patients perspective mean?

• Which methodological approach should be used?

Short time Restricted budget Need of trustworthy, reliable results Transparent inclusion of results into the guideline

6

Vorführender


CPG as a strategy to improve the quality of healt care of this disease. Set standards of care for clinicians and insurers.

Patients perspective involvement

• Comprehensive and systematic approach

• Integrating patients preferences, values and needs in the recommendations developed

• Purpose:

1. To empower the patient to have a say in a shared decision-making approach of clinical practice

2. As an strategy to improve adherence to CPG

7

Vorführender


Not only health care values but moral and social values.

Objective

• To explore the preferences and values of patients and their relatives, involved in the process of care of childhood Acute Lymphoid Leukemias (ALL), Acute Myeloid Leukemia (AML), Hodgkin´s Lymphoma (HL) and Non-Hodgkin´s Lymphomas (NHL) that are to be included in a CPG.

8

Concept mapping Qualitative-Quantitative methodology used for conceptualizing a group ideas, experiences, feelings about a specific topic.

9

Vorführender


Concept mapping is a methodology to create a visual representation of participants experiences. It has mainly two elements, an element of identification of individual concepts and then a second element of showing the relationship between them.

Participants • Patients older than 16 years old • Carers older than 18 years old • Mid-secondary educational level • Carers of ALL, AML, HL, NHL patients • Insured by different schemes (Contributive, Subsidized and

Non-affiliated but covered) • Women and men • Parents • Survivors • Carers other than parents • Health professionals • Urban and rural • Being treated at different Hospitals 10

Vorführender


We purposively selected 34 participants trying to include a wide variety of patients and carers involved in the process of care of those diseases.

Concept mapping 1. Generation of statements

Focus: Quality of life framework ¿What is needed for a child or adolescent diagnosed with Leukemia or Lymphoma to have a good quality of life?.

“the ability of the child or adolescent to function in different domains of life besides an adequate

psychosocial adjustment to everyday life situations”1

1. Kreitler S, Weyl Ben Arush M. Psychosocial aspects of pediatric oncology. England: Wiley

interscience;2004

11

Vorführender


We conducted a four phases, 10 hours, workshop over two days. The first phase was the generation of statements. We used a quality of life framework to explore patients values, needs and preferences. In this phase we had to elicit enough information on patients values, needs and preferences not restricted to the hospital context. So, we asked the participants to generate statements that answered the focus question: Quality of life: let us know the real impact of the disease and the effect of the health care process on the lives of patients and carers. Video to evoke The analysis of quality of life enable us to address, anticipate and possibly remediate the difficulties of the disease and its treatment. It measures the real impact of interventions. As a result 80 statements were generated and printed on individual cards.

Concept mapping 2. Structuring of statements

Rating

1 2 3 4 5 NO

IMPORTANCE VERY

IMPORTANT

2. Controling pain and vomiting

5. Improving child appetite

10. That health care professionals

behave friendly

12. Making a timely and

exact diagnosis 8. Family and carers should

comply with the treatment

12

Vorführender


They had to organize those cards in 5 items likert scale according the importance it had to improve or guaranteed quality of life of a child with Leukemias or Lymphomas.


Rating

1 2 3 4 5 NO

IMPORTANCE VERY

IMPORTANT




behave friendly


exact diagnosis

8. Family and carers should


13


Rating

1 2 3 4 5 NO

IMPORTANCE VERY

IMPORTANT




behave friendly


exact diagnosis



14


Rating

1 2 3 4 5 NO

IMPORTANCE VERY

IMPORTANT




behave friendly


exact diagnosis



15


Rating

1 2 3 4 5 NO

IMPORTANCE VERY

IMPORTANT




behave friendly 12. Making a timely and

exact diagnosis



16


Rating

1 2 3 4 5 NO

IMPORTANCE VERY

IMPORTANT




behave friendly


exact diagnosis



17


Sorting




behave friendly


exact diagnosis



18

Vorführender


After ranking each item, we asked participants to sort them into clusters. They have to group statements that apparently belong together or appear to have a relationship.


Sorting




behave friendly


exact diagnosis



19


Sorting




behave friendly


exact diagnosis



20


Sorting



behave friendly


exact diagnosis


comply with the treatment 5. Improving

child appetite

21


Sorting



exact diagnosis


comply with the treatment 5. Improving

child appetite 10. That health care

professionals behave friendly

22

Concept mapping 3. Analysis

A type of Multivariate analysis:

Multi dimensional Scaling Hierarchical cluster analysis

Sub-group analysis: Acute Lymphoid Leukemia Acute Myeloid Leukemia Hodgkin Lymphoma Non Hodgkin Lymphoma Ariadne® Software

23

Vorführender


The results of the previous phases were entered into the Ariadne Software designed specifically for this methodology. This software runs two types of analysis: Multidimensional scaling that establish the relationship between each item and represent that relationship in a two-dimensional map. Then, it makes a hierarchical cluster analysis that group items tha have the strongest relationship and create boundaries around them.

Concept mapping 4. Interpretation Participants Naming clusters Discussing relationships Researchers Translating concept maps content into health care

questions and outcomes

24

Vorführender


Interpretation was done first individually then in groups.

RESULTS

25

Humanized Care CL 1

Healt care insurance CL6 Hospital environment adaptation

CL5

Emotional support at home CL3

Information and support to the family CL2 Family-given care

CL4

Home-Hospital Links CL8

Hospital Infrastructure

CL7

Professionals’ technical capacity CL9

26

Vorführender


This is the final result after analysing and interpreting. MDS produced a map of points where each point represent a statement.The distance and location of items represent the conceptual relationship between them. The cluster solution produced this groups that were interpreted and labeled with those names by participants. We have the map of concepts related to a good quality of life of children with ALL, AML, HL and NHL.

Results

27

Cluster name Items examplesMean Importance

ScoreTotal

Cluster

"Making a timely and exact diagnosis" 4,38

"Not missing chemotherapy" 4,23

"Health care personnel and patients communication should be warm and loving"

3,45

"Making children/adolescents feel important and useful" 3,87"Encourage children to dream beyond disease" 3,52

"Economic support to the family" 3,43"Parents should be able to afford what children need" 3,38

"Family and carers should comply with the treatment" 4"Parents should have information about children care" 3,14

"The child must keep studying" 2,78"Having recreational places" 2,65

"Comprehensive care for the children must be guaranteed by law" 4,48"Insurance companies shouldn´t deny neither procedures nor treatment for the disease"

4,3

"At the E.R. they should be given priority care" 4,14"Diagnostic tests for the children should be a priority" 3,74

"Parents shouldn´t have to go through so many administrative procedures for the treatment of their children"

3,87

"Physical activity must be promoted during hospitalization" 2,742,62

Health care insurance

Hospital infrastructure

Home-Hospital Links

Hospital environment adaptation

Health professionals´ technical skills and humanized care

2,40

4,14

3,49

Table 2. Concept map clusters structure and ranking of sampled items

3,37

2,69

2,73

3,08

Family-given care

Emotional support at home

Information and support to the family

Vorführender


Here you see examples of the structure of some cluster and the ranking results for some of them and for each cluster. Among those that have the highest rank were those related to health care insurance,hospital infrastructure and health professionals technical skills and humanized care.

How did we use the results?

Cluster Item Generic health care question

"Doctors should routinely order exams to detect the disease on time""Health care professionals should be on the alert for changes in the disease"

What is the best strategy to follow up patients with ALL?

"Controlling pain and vomiting" What are the best strategies to control pain and emesis in patients with ALL?

"Treating the fever" What are the best strategies to control fever in patients with ALL?

Outcomes

"Controlling pain and vomiting" Pain control

Quality and good service "Health care institutions should take into account children´s opinion" User´s satisfaction

Healt care questions

Children care "Providing psychological support to the child" What are the best strategies to provide emotional support to children with HL and their families?

Family care "Promoting support networks for the family" How to promote health supporting networks for the children with HL and their families?

Timely care "At the E.R. they should be given priority care" How should health institutions be organized to allow children with HL to continue with their normal life?

Outcomes"Families and patients must have psychological support during and after treatment" Emotional state of the family

"Families and patients must have psychological support during and after treatment" Emotional state of the children

Children care

Table 3. Examples of clusters, statements and health care questions suggested to be included into the CPG. Use of concept mapping results.

ACUTE LYMPHOID LEUKEMIA

Humanize medical care

"Controlling pain and vomiting" Emesis control

HODGKIN´S LYMPHOMA

28

Vorführender


For the health care question formulation phase, we selected those items directly relevant to clinical practice guideline and translate them into health care questions. The interpretation of maps by participants showed us which items could be relevant directly to health care and for the CPG. 36 Health care questions 32 Outcomes

How did we used the results?

• GRADING RECOMMENDATIONS

GRADE APPROACH Quality of evidence Balance of desirable/undesirable outcomes Values and preferences Resources use

1. Patients participation during workshop

2. Patients representatives participation

3. Concept mapping results presentation during workshop

29

Vorführender


We also used the results at the grading phase when recommendations were reviewed and graded. Since we followed the GRADE approach, values and preference enhanced by the concept mapping where systematically presented to be considered when each participant were voting each recommendation. Direct input was obtained also by including patients and patients representatives at the decision group.

Conclusions • Concept mapping as an alternative to indirect and

systematic patient involvement in CPG Strenghts: 1. Gives structure to ill-defined topics or issues 2. Yields results in a short time 3. As much resources as other qualitative

methodologies Weaknesses: 1. Needs more research on validity and reliability 2. Participants exhaustion 3. More systematic method to use results 30

Vorführender


Definitively concept mapping should be considered as an alternative to patient involvement. Strengths: 1. Transforms intangible reality into an easy-to-use information 2. Shortens the analysis phase of the primary research exercise. 3. Resources: Software license, trained personnel and logistics

Conclusions To really integrate patients perspetive CPG

should broad their focus: Family support: Psychological support and orientation on

home care Hospital services arrangements Linking hospital and home services

Important to define purpose of patient involvement in CPG

31

Vorführender


CPG could integrate non strictly clinical issues if they want to really impact quality of care. At least in our context much needs to be done to support the whole process of care. CPG have many users among them are the insurers or administrators of health system resources.So CPG should serve to impact their decision. Examples of non clinical aspects that should be integrated into the guideline are: ….. Purpose: To help clinician to take patient sensitive decisions To empower patient to be involved in a collaborative decision making process To generate best recommendations for the majority of patients.

Acknowledgements • We thank all the patients and carers who voluntarily and

committedly participated in this study. • We appreciate the contributions of Ana Marcela Torres MSc

and Adriana Linares MD leaders of the development team. • Everyone from the CINETS alliance team. • Ms Sarah Chalmers from NICE public and patient involvement

programme. • Prof. Craig Whitttington, prof. University College of

London,NCCMH UK. • Ms Claudia Cattivera , member of the Cochrane

Collaboration and Patient safety network • Dr. Gordon Guyatt, prof. Clinical epidemiology and

biostatistics at McMaster University. • QUATRO study group

32

Thank you!!

33

Helvert Felipe Molina León - g-i-n.net · Diana Patricia Rivera MD, MPH. Helvert Felipe Molina MD, MPH . CINETS Alliance . 2 . Good afternoon. My name is Helvert Felipe Molina, I´m

Documents