Short - term Integrated Rehabilitation for Thoracic Cancer Intervention Manual Jo Bayly a , Matthew Maddocks a , Irene J Higginson a , Andrew Wilcock b , a Cicely Saunders Institute, King’s College London, London, UK b University of Nottingham and Nottingham University Hospitals NHS Trust, Nottingham, UK September 26th, 2019 How to cite this manual: Bayly, J., Fettes, L., Douglas, E., Teixiera, M. J., Peat, N., Tunnard, I., … Maddocks, M. (2019). Short-term integrated rehabilitation for people with newly diagnosed thoracic cancer: a multi-centre randomized controlled feasibility trial. Clinical Rehabilitation. https://doi.org/10.1177/0269215519888794
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Short-term Integrated Rehabilitation for Thoracic Cancer
Intervention Manual
Jo Baylya, Matthew Maddocksa, Irene J Higginsona, Andrew Wilcockb, aCicely Saunders Institute, King’s College London, London, UK bUniversity of Nottingham and Nottingham University Hospitals NHS
Trust, Nottingham, UK
September 26th, 2019
How to cite this manual:
Bayly, J., Fettes, L., Douglas, E., Teixiera, M. J., Peat, N., Tunnard, I., … Maddocks, M.
(2019). Short-term integrated rehabilitation for people with newly diagnosed thoracic cancer:
a multi-centre randomized controlled feasibility trial. Clinical Rehabilitation.
https://doi.org/10.1177/0269215519888794
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 1
The rehabilitation provider will use a person-centred interviewing style [205] during the initial
assessment to elicit and identify immediate priorities and concerns. They will check illness
understandings that relate to the person’s functional well-being. The provider will support the
participant to express their expectations of rehabilitation. During the opening conversation,
the provider should assess for cues that the person has immediate and pressing concerns.
These may be verbally or non-verbally communicated. If present, the provider will begin the
assessment by exploring these concerns. If no immediate concerns are reported, the person
will be supported to express their expectations of rehabilitation. During the assessment, the
provider will use an asset based rather than a negative deficit approach, finding out what is
helping them to manage any concerns they have identified. If no immediate concerns are
reported, the provider will explore if the person has any concerns for the future. They will
explore daily life roles and activities that are important to them and identify any impairments
as well as activity limitations and restrictions in participation. The latter are important as they
may occur before and lead to the onset of impairments via physical deconditioning and social
isolation. Positive illness perceptions, beliefs, available resources and activities the person is
already undertaking to maintain functional well-being will be identified and affirmed. As
indicated, the provider will objectively assess physical capabilities and functional
performance, e.g. mobility, muscle function, breathing pattern at rest and on exertion,
strategies used to recover from breathlessness episodes and performance of ADL.
5.1 AimsofassessmentTo identify modifiable factors to improve/maintain capability, opportunity and motivation to
participate in valued functional activities.
! To identify immediate expectations, concerns, priorities and goals ! To understand how the person is talking about their condition, their expectations of
oncology treatment and this rehabilitation intervention ! To explore ongoing participation in daily activities including addition or avoidance of
activities (i.e. changes in sedentary time, new activities, cessation of usual activities) ! To screen for symptoms, social and physical environment factors influencing function ! To explore how illness beliefs and concerns impact on function ! Objective assessment as indicated
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 18
6 Goals of Integrated Short-term Rehabilitation for Thoracic Cancer
“Happiness and a good life are possible even within the constraints of illness” (Havi Carel,
‘Illness’,p.103).29
The overarching goal of short-term integrated rehabilitation is to optimise the person’s
functional well-being as they commence cancer treatment. The provider will collaborate with
the participant, and where available their main supporting person, to devise strategies to
optimise:
! prevention and/or self-management of distressing and limiting symptoms
! physical activity levels and fitness for ‘normal life’ and treatment ! performance and participation in daily routines, roles and activities
A goal orientated action plan will be agreed and recorded with copies for the participant and
health care team. Behaviour change techniques will be selected to support the participant to
gain the knowledge and skills needed to enact their action plan and achieve identified goals.
The goals and action plan will be reviewed and renegotiated during follow up rehabilitation
sessions. Adverse events that may arise during enactment of the action plan and strategies
for managing them will be discussed with the participant (e.g. delayed onset muscle
soreness). They will be encouraged to contact their usual health care team as soon as
possible. If there is a risk of a serious adverse event, the participant will ask the participant’s
consent to contact their usual health care team on their behalf. The clinician will signpost the
participant to relevant service providers where possible.
7 Comparison to other approaches This intervention uses similar approaches to other rehabilitation interventions in this
population:
! Explicit use of behaviour change techniques with person-centred goal setting67, 68
! Home based physical activity and exercise as primary intervention68, 69
! Symptom self-management strategies as primary intervention (may include physical
activity and exercise)70, 71
The intervention is dissimilar to other rehabilitation interventions in the following ways:
! It combines single interventions with a supporting evidence base according to
participants’ needs and priorities.
! It includes preventative strategies
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 19
! It is driven by the participant’s goals, with use of actions plans and BCTs focusing on
what is important to each participant
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 20
8 Specification of defining interventions Table 1 Specification of defining interventions
Essential and unique elements Person-centered assessment to identify:
• illness perception, beliefs and understanding • immediate priorities and concerns • actual and potential threats to functional wellbeing
Identify and support positive, habitual physical activities and positive function related behaviours Address illness perceptions and beliefs as they relate to functional priorities and concerns Address function limiting negative emotions (within the provider’s scope of practice) Support participant self-beliefs relating to goals and action planning Individualised goal setting (goal behaviours and/or outcomes) and action planning to direct rehabilitation aims and activities Tailored information about the possible health consequences of carrying out the action plan and achieving goals Signposting for ongoing rehabilitation support (health and community providers) Essential but not unique elements Rehabilitation provider has expertise at level 4 (NICE Improving supportive and palliative care for adults with cancer; chapter 10 page 140)72 Optimise physical activity If symptomatic: deliver symptom management interventions Use behaviour change techniques (BCTs) to support participant to carry out their action plan Essential BCTs include information about health consequences, goal setting, action planning, problem solving, instruction, demonstration, practice of techniques, feedback, personalised feedback, verbal persuasion about capability, self-monitoring, review goals and action plan, self-monitor safe performance of action plan Grade action plan tasks and strategies according to participant’s capability, opportunity and motivation. Communicate summary of rehabilitation intervention with wider health care team Recommended elements Participant’s main carer involved during intervention (where available and where participant chooses) Strategies to minimise the onset of symptoms Walking and Home based strengthening exercise Community based exercise and physical activities (i.e. local gym, bowling club, dancing, group walks) Recommended BCTs include prompts and cues, habit formation, social support Use equipment when indicated (e.g. hand-held fan for breathlessness, walking aid for breathlessness or mobility, hand held weights for strengthening exercise) Proscribed elements Psychological interventions beyond level 2 (NICE Improving Supportive and Palliative Care for Adults with Cancer; chapter 5. pg. 78) 72 Nutritional supplements Nutritional advice beyond scope of practice (see NICE Improving Supportive and Palliative Care for Adults with Cancer; chapter 10 page 140) 72 Invasive procedures (acupuncture, aromatherapy, injection therapy)
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 21
It is expected that the intervention will take place over one to three sessions, each lasting between 30-90 minutes, depending on individual participant circumstances.
First contact – usually at scheduled appointment in an acute setting or participants home: ≤ 14 days following consent to participate ! Involve carer where indicated ! Identify the participant’s expectations of rehabilitation, consider asking why they decided to join the trial ! Let participant know how long session will last and negotiate time if needed, explain the aims and format of sessions ! Functional screening assessment using principles of motivational interviewing ! Check illness understandings, identify functional priorities, concerns, resources ! Identify and support positive, habitual physical activities and positive function related behaviours ! Address negative emotions and encourage self-belief in capability ! Agree goals and personalised rehabilitation action plan for self-management of symptoms; physical activity & fitness; performance and participation daily life activities ! Education, training, information and support to support goal orientated action plan ! Tailored support for patients and their family to self-manage anticipated future situations ! Consider need for onward referrals on discharge ! Liaise with relevant health, social and voluntary sector professions ! Communicate summary of rehabilitation intervention with MDT Second contact - at scheduled appointment in acute setting, participants home or telephone ≤ 14 days after 1st session ! Reassessment, review goals and outcomes, practice techniques and strategies ! Identify any new symptoms, concerns priorities or goals ! Revise personalised rehabilitation action plan ! Education, training, information and support to support new action plan ! Discuss need for onward referrals, plan discharge Third contact- at scheduled appointment in acute setting, participants home or telephone: ≤ 14 days after 2nd session ! Reassessment, review goals and outcomes, practice, reinforce techniques and strategies ! Tailored support for patients and their family to self-manage anticipated future situations ! Revise goals and agree a discharge action plan, ! Signpost and support onward self-referrals where needed ! Provide information about resources, processes and contact details for ongoing support and follow up ! Send a discharge letter summarizing rehabilitation intervention and ongoing rehabilitation action plan to participant, copy letter to oncologist/MDT Table 2 Session format and content
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 22
10 General Format
10.1 Levelofstructureandflexibilityincontent
The intervention allows for a high level of flexibility in structure and content. In the first
session, the provider informs the participant about the aims and scope of the rehabilitation
intervention and invites questions. This is followed by a person-centred assessment, using
principles of motivational interviewing to engage and elicit concerns (see section 5 for
structure of initial assessment). The provider and participant will agree priorities and
concerns that can be addressed during the rehabilitation sessions. Techniques and
strategies will be selected and personalised as needed to address the priorities and
concerns set out in their goals (if set) and their action plan. The 2nd and 3rd sessions follow a
similar structure. The initial part of the session will include a review of the participant’s
current well-being, priorities, concerns and action plan items from previous session. The final
part of session two will introduce discharge planning. This will be finalised at the end of
session three. The vignettes below in section 13 provide examples of session content.
10.2 Extrasessiontasks
The participant will undertake actions and use techniques and strategies as practised during
the session and as documented in their personalised rehabilitation plan. The participant may
choose to use a diary to record actions. The rehabilitation provider will seek evidence of
enactment at following session. Use of diary, unprompted and prompted self-report of
actions undertaken and demonstration of effective and/or improved techniques and
strategies will be recorded as evidence of enactment. Completion and non-completion of
action plan tasks will be reviewed supportively and without judgement. Goals, action plans,
techniques and strategies will be amended or progressed as indicated.
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 23
11 Intervention Components
11.1 Assessment
The main aims of the assessment is set out in section 5 above.
If common symptoms, (including breathlessness, fatigue, pain, reduced mobility and
appetite) are not volunteered, targeted screening questions should be used to establish if
they are a cause for concern. Screening questions should be used to establish if the
participant is managing their usual personal, domestic and instrumental activities of daily
living, including leisure, hobbies and work.
It should not be assumed that the presence of a symptom or concern is distressing or that
the participant is not able to resolve it for themselves. Instead, the participant should first be
asked about their own thoughts about how it is impacting on function, how they perceive the
causes, consequences and potential solutions. Examples of assessment questions suited to
this approach are presented in Figure 3 below.
Where the participant has good understanding and a viable plan, this should be supported
and extended as indicated. Where the participant does not have good understanding, or a
potentially ineffective plan, the provider should ask the participant if they are interested in
learning more about the issue. If the person is interested, share potentially helpful strategies
that their health care team consider useful and that other people in their situation have found
helpful. The participant is then supported to identify goal(s) for the interventions and a
rehabilitation plan to achieve their goal(s) is negotiated and agreed. Intervention techniques
and strategies should then be implemented as indicated below in sections 11.2-11.7.
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 24
Figure 3 Examples of Assessment Questions Suggested opening questions:
Negotiate aim of the first session, i.e.
What I’d like to do now, is find out more about what matters to you at the moment, what
you are hoping to get out of this session.
Suggested aim of session if participant does not articulate expectations
We can explore some ideas to [help you stay feeling well OR help you to feel better] and
come up with a plan together that works for you. I’m not going to try to persuade you to do
things or make any changes that don’t seem right to you, but I can share with you what
has been helpful to other people in your situation. How does that sound?
Identify the participant’s priorities and concerns
What matters to you at the moment?
What’s important to you right now?
Can you tell me in your own words how things are for you at the moment?
Can you tell me about a typical day for you over the last few days or weeks?
What’s been going well for you over the last few days or weeks?
Is there something that’s been causing you difficulty over the last few days or weeks?
Is there something else that’s bothering you at the moment?
Suggested supplementary questions:
Is there something that you have started doing to help yourself?
Is there something those close to you are doing to help you?
Is there something that you used to do that you’re struggling to do now, or maybe have
even stopped doing?
Tell me more about what happens i.e. when you try to do [specific activity]
Can you tell me what makes you stop and rest?
Tell me what it feels like when… i.e. when you are doing [specific activity]
Tell me what you’re thinking about when…i.e. you feel short of breath?
Is there something that’s helping, making things easier?
Is there something that’s not helping, that’s making things harder?
11.2 GoalSetting
Goals should address the person’s immediate concerns and priorities relating to symptom
management, physical activity, exercise or activities of daily living. They should be person-
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 25
centred and phrased in participant’s language 73 (some participants may not be comfortable
with the language of goals). Person-centred care in integrated oncology and palliative care
has been defined as “care that is respectful of, and responsive to, individual patient
preferences. It is expected that rehabilitation plans will aim to improve fitness and
participation in daily activities for some, whereas for others the aim will be to maintain
current levels of participation or to decelerate the impact of impairments on functional well-
being.
To set person-centred goals, capture the meaning associated with the goal, i.e. ‘to walk to
my daughter’s house every day’ (behaviour goal) or ‘to walk to my daughter’s house on my
own with my stick in one week’ (outcome goal). For some, uncertainties relating to their
current health status may make it difficult for them to set goal outcomes. They may prefer to
choose meaningful behaviour goals i.e. ‘to walk in my garden every day and to do gardening
on my good days’. Others may prefer to set a goal outcome, i.e. ‘to be able to walk to local
shop to buy groceries in four weeks’. Exercise related goals can also be set as behaviour or
outcome goals, for example, ‘I will do my strengthening exercise three times each week’, or
‘I will be able to do fifteen sits-stand exercises, twice a day, three times a week by the time I
finish radiotherapy treatment.’
Goal related behaviours should be supported by problem solving, to identify any obstacles
and a plan of action. This should be specific, including where, when, how and with who the
person will do the goal related behaviour. Implementation intention plans are a method of
combining problem solving with action planning to achieve goal related behaviours when
obstacles are expected to arise. Also know as ‘if.. then..’ plans, they provide a
predetermined plan. For example, ‘if I’m low in mood and don’t feel like walking the dog, then
I’ll call a friend and ask them to come with me’ or, ‘if it’s raining and I can’t walk in the park,
then I’ll go to the local shopping mall instead’. 75
Short-term goals should be specific, measurable, attributable to the intervention, realistic and
time related. Long term ‘aspirational’ goals are important if they relate to the person’s sense
of self and identity, 74 but should be supported by short term goals which are steps on the
way to achieving that goal. Goals should be documented on participant’s Rehabilitation Plan
and in the Case Report Form.
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 26
To facilitate standardised person-centred goal setting practice, all providers will be provided
with the booklet “Setting and implementing patient-set goals in palliative care” 75
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 38
Lives alone in ground floor flat. Currently off work (barman). Stage I NSCLC treated with
lobectomy. Current symptoms include nausea (no vomiting) and some post-surgical pain
(well-controlled with analgesia). Managing all personal and domestic activities, paces
himself. Friends helping with shopping. Symptoms limiting instrumental activities. Usually
plays five a side football with friends and fairly heavy tasks at works, lifting barrels, crates as
well as on his feet for long periods. Strongly motivated to return to normal activities. Worried
about ‘damaging himself’ if starts back at work or football too soon but feels his cancer has
been removed and is optimistic about being able to get himself back to normal.
Intervention, first contact face to face, second and third over telephone:
Very clear about his expectations for rehabilitation - wants information about how quickly he
can return to work and football.
Goals: To return to work by six weeks post-surgery (phased return to heavy duties). To
return to football by 12 weeks post-surgery, if GP agrees and no complications arise.
Action planning: Discussed week by week increases in physical activity recommendations
in Cancer Centre post-surgery patient information booklet. Agreed types of physical activities
he can aim to achieve each week to build up his fitness and confidence, to include daily
activities, strengthening exercises and brisk walking. Discussed health benefits of aerobic
(walking) and strengthening exercise. Cancer Centre physical activity after cancer booklet
provided. Safety factors discussed. Provided with information about gym facilities at cancer
centre rehabilitation department.
Instructed, demonstrated and practiced:
1. Trunk, upper limb and breathing exercises to improve chest wall mobility (and to
reduce pain on movement).
2. Lower limb strengthening exercises (repetitions and sets to his capability)
3. Instructed in safe brisk walking technique, aiming to achieve 10-minute episodes, x3
daily, x5 weekly by 6 weeks post op.
4. Instructed and practiced how to self-monitor to achieve moderate intensity of
exercise.
Action Plan:
! To introduce minimise sedentary time in flat by increasing domestic activities and home-
based exercises as taught, as pain allows
! To progress duration of brisk walking episodes, repetitions and sets following during 2nd
and 3rd session telephone contacts depending on self-reported pain and response to
exercise.
! To consider self-referral to Cancer Centre gym programme.
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 39
Problem solving to identify barriers to action plan. Participant to use analgesia as prescribed.
Exercise modification plan agreed if increased pain during or following exercise. Participant
concerned he’ll be bored doing walking. Agreed to create a walking playlist on his phone.
Also, he will identify and plan ‘destinations’ in advance, to get shopping, to visit friend or
place of interest.
Outcome:
Confidently doing exercises. Pain on movement now minimal. Weather has put him off doing
as much walking as he wanted to but is managing brisk walking when he does go out.
Perceives his strength to be returning. Has self-referred to cancer centre gym facilities and
has first appointment booked. Positive about returning to work. Plans to discuss fit for work
certificate with GP at next appointment in 2 weeks.
Figure 5 Case 3- Potential theory-based mechanism of impact to optimise participation: 57-year-old
man squamous cell carcinoma stage 1, PS 0-1
Bayly J, Maddocks M, Higginson, IJH, Wilcock A. Short-term integrated rehabilitation for thoracic cancer. INTERVENTION MANUAL 26 09 19 40
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