Short term Integrated Rehabilitation for Thoracic Cancer … · 2019-12-03 · exercise based physical activity interventions in thoracic cancer, especially among patients scheduled

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

Contents 1 Introduction ....................................................................................................................... 4

2 Background ....................................................................................................................... 5

3 Overview of Intervention ................................................................................................... 7

3.1 General approach ...................................................................................................... 8

3.2 Theoretical rationale for rehabilitation in thoracic cancer .......................................... 8

3.3 Modifiable factors and theoretical mechanisms of impact ....................................... 13

4 Conception of the problem .............................................................................................. 14

4.1 Agents of change ..................................................................................................... 14

4.2 Factors influencing functional well-being (not exhaustive) ...................................... 14

4.3 Factors associated with health related behaviour change ....................................... 15

4.4 Case formulation ...................................................................................................... 16

5 Assessment of function ................................................................................................... 17

5.1 Aims of assessment ................................................................................................. 17

6 Goals of Integrated Short-term Rehabilitation for Thoracic Cancer ................................ 18

7 Comparison to other approaches .................................................................................... 18

8 Specification of defining interventions ............................................................................. 20

9 Session format and content ............................................................................................ 21

9.1 Format for delivery, number and frequency of sessions .......................................... 21

10 General Format ........................................................................................................... 22

10.1 Level of structure and flexibility in content ............................................................... 22

10.2 Extra session tasks .................................................................................................. 22


11 Intervention Components ............................................................................................ 23

11.1 Assessment ............................................................................................................. 23

11.2 Goal Setting ............................................................................................................. 24

11.3 Behaviour Change Techniques ............................................................................... 26

11.4 Rehabilitation Components ...................................................................................... 28

11.4.1 Symptom self-management .............................................................................. 28

11.4.2 Physical activity and exercise ........................................................................... 29

11.4.3 Participation in Activities of Daily Living ........................................................... 30

11.5 Rehabilitation Action Plan ........................................................................................ 30

12 Intervention fidelity ...................................................................................................... 30

12.1 Intervention providers .............................................................................................. 31

12.2 Intervention delivery ................................................................................................. 31

12.3 Treatment receipt and enactment ............................................................................ 31

13 Intervention vignettes .................................................................................................. 33

13.1 Case 1: 61-year-old woman with stage IV adenocarcinoma, PS1 ........................... 33

13.2 Case 2: 76-year-old man with extensive pleural mesothelioma PS 2 ...................... 35

13.3 Case 3: 57-year-old man squamous cell carcinoma stage I, PS 0-1 ....................... 37

14 References .................................................................................................................. 40


Table 1 Specification of defining interventions ....................................................................... 20

Table 2 Session format and content ...................................................................................... 21

Table 3 Behaviour Change Techniques used in intervention delivery (BCTT vs1)79 ............. 26

Figure 1 Conceptual model for short-term integrated rehabilitation for thoracic cancer

(adapted from Wade’s Rehabilitation Process)[49] Top panel: Integrated Short Term

Rehabilitation process. Bottom panel: Detailed components relating to context, assessment,

intervention, mechanisms of impact and outcomes ............................................................... 13

Figure 2 COM-B Model of behaviour change[57] ................................................................... 15

Figure 3 Examples of Assessment Questions ....................................................................... 24

Figure 4 Case 1-Potential theory based mechanism of impact to optimise participation: 61

year old woman with stage IV adenocarcinoma, PS1 ............................................................ 35

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 ....................................................... 39


1 Introduction

This intervention manual provides detailed guidance for the delivery of Integrated Short Term

Rehabilitation for thoracic cancer for the purpose of a randomised controlled feasibility trial. It

is one output from a multi-centre randomised feasibility trial

http://www.isrctn.com/ISRCTN92666109 and was written following Carroll and Nuro’s

guidelines for the development of a stage I intervention manual.1 The manual sets out the

theoretical rationale, proposed mechanisms of impact and the goals of treatment for the

active ingredients of the model in this population. It describes the core and flexible

rehabilitation components including the format and mode of delivery. In addition, it describes

methods to attain and record treatment fidelity. The manual will facilitate training of therapists

to ensure standardised delivery and recording of this rehabilitation model within the planned

feasibility trial.2, 3 It is expected that the manual will be further refined following the feasibility

trial for therapists delivering the rehabilitation model in any subsequent trials to test

effectiveness.


2 Background While the functional, practical and daily support needs of patients with thoracic cancer are

rarely attended to in the rehabilitation 4 and supportive care literature,5, 6 people who receive

a diagnosis of thoracic cancer experience threats to functional independence which impact

on their normal roles and routines in daily life.7, 8 Rehabilitation aims to “assist individuals

who experience, or are likely to experience, disability to achieve and maintain optimal

functioning in their physical and social environment”.9 Therefore, rehabilitation services for

people with thoracic cancer delivered following diagnosis may mitigate and ameliorate some

of the consequences of the disease and its treatment.10 UK and international guidelines

recommend that people with cancer should be able to access person centred rehabilitation or

exercise when needed from pre-diagnosis through to survivorship or end of life.10-12

Rehabilitation interventions are diverse in content and focus. A prospective surveillance

model utilising a stepped care approach to the management of actual and potential

impairments has been recommended.13 The authors acknowledge that lack of testing means

beneficial outcomes cannot be assumed and a detailed model for patients with thoracic

cancer has not yet been developed. There is increasing evidence demonstrating benefit from

exercise based physical activity interventions in thoracic cancer, especially among patients

scheduled for, or following, surgical treatment.14, 15 Studies have demonstrated that exercise

training is safe in this population.15, 16 Benefits may include improved health related quality of

life and symptoms,17 mood and exercise capacity16, 18 when included within a patient-centred

rehabilitation approach.19 Symptom self-management interventions, for example targeting

breathlessness which is highly prevalent in advanced thoracic cancer, also demonstrate

effectiveness.20

Despite evidence for effectiveness, multiple barriers to rehabilitation have been identified

raising uncertainty about when, where and how to deliver rehabilitation in thoracic cancer.13,

21 Currently it is rarely provided at diagnosis and it is not clear what components of

rehabilitation should be delivered at this time. Exercise and symptom self-management

interventions are rarely joined up. There is also an assumption that if people maintain

physical fitness or improve confidence to self-manage their symptoms, then increased

participation in daily activities will follow. Additionally, ‘uni-modal’ interventions may exclude

people who are either not willing or able to participate in exercise, or who have not yet

developed or reported symptoms. A recent negative trial found that an occupational therapy

intervention did not improve independent participation in daily activities.22


The majority of newly diagnosed patients have advanced disease and their willingness to

participate in rehabilitation can be influenced by symptoms, previous experience, perceived

relevance, personal beliefs and logistical concerns.23-25 People with impairments and

disability at diagnosis may not be receptive to rehabilitation especially if they misperceive

what services have to offer.24 Barriers also exist within health care systems where workplace

resources, culture and staff perceptions of patients’ needs and capability influence the

provision of and referral for rehabilitation interventions.24, 26, 27 Finally, outcome measures to

evaluate changes in functional activities and participation following rehabilitation

interventions are lacking.28 Studies integrating physical activity based, exercise and symptom

self-management interventions with strategies to optimise functional task performance and

participation in daily life in people with newly diagnosed thoracic cancer are lacking.

Therefore, there is uncertainty about what model of rehabilitation can both meet people’s

needs and integrate with oncology services following diagnosis as treatment commences

and further research is warranted.


3 Overview of Intervention “All this changeswhenyouare ill. Life ceases tobea long, gently flowing river.The futureno

longer contains the vague promise of many decades. Death is no longer an abstract, remote

notion.”(HaviCarel,“Illness,”p.143).29

To address barriers and uncertainties, we developed a new model of Short-term Integrated

Rehabilitation, accessible and acceptable to patients newly diagnosed with thoracic cancer,

to be delivered before or as cancer treatment commences. The overarching aim is to

optimise independent participation in daily activities, roles and routines through and beyond

cancer treatment. To achieve this aim, the intervention brings together the participants

priorities and goals with rehabilitation components to address and achieve them, tailored to

each person’s unique context. The intervention is also preventative in that it aims to

anticipate and minimise the impact of disease and treatment related factors that act as

threats to future function. As all clinical rehabilitation interventions involve clinicians and

patients performing behaviours targeted at health outcomes,30 our development activities

included a systematic review of behaviour change approaches used within existing

rehabilitation interventions in this population.31 The review findings informed our explicit

inclusion of behaviour change techniques within this intervention manual.

Our development activities also included engagement with key stakeholders (patients,

carers, professionals) via focus groups to identify the components to best support people to

participate in daily activities and remain active and independent. 32 Findings from these

groups and from the literature describing enablers and barriers to rehabilitation, 24, 25, 33

strongly suggest that a person centred and tailored approach is most likely to address the

diverse functional needs experienced by people newly diagnosed with thoracic cancer. This

approach is reflected in the broad content of the intervention and the manner of delivery,

including drawing on the interpersonal skills of the clinicians.34 Participants supported

intervention components targeting disease and treatment related impairments including

deconditioning, fatigue, breathlessness, pain 6, 35, 36 and for those with advanced disease,

cachexia syndrome (muscle and fat loss, anorexia and reduced physical function).37

However, the findings also enriched and expanded the focus of the rehabilitation model to

explicitly focus on illness experience, how people live with disease.38 Potentially modifiable

factors relating to illness experience include beliefs, meanings and perceptions, social

connections and relationships with health care professionals.7, 39, 40 Focusing on how

participants experience their illness may enhance engagement with the rehabilitation


intervention. It will support providers and participants to select rehabilitation components to

address immediate concerns and priorities relating to daily activities and help them continue

to live well, as normal as far as is possible, within the constraints of their disease and

treatment. It aims to minimise the onset of functional impairments and support those with

impairments as they adjust and adapt. For those who are receiving curative treatment,

rehabilitation may support them to return to all aspects of their normal life, including work.

For those living with ongoing disease, it aims to creatively support them to find health within

illness.41

3.1 Generalapproach

In line with UK recommendations, this intervention aims to deliver ‘good rehabilitation’.42 It

focuses on outcomes that patients have said are important to them.7, 43 It is a pro-active,

enabling intervention focusing in the impact that thoracic cancer has on the person’s life. The

rehabilitation provider will work in partnership with the person, and those important to them

who are providing support, to optimise their potential and independence as they commence

cancer treatments or supportive and palliative care.

3.2 Theoreticalrationaleforrehabilitationinthoraciccancer

In keeping with current guidelines for the development of complex interventions,44 this

intervention is underpinned by theories that propose explanations for the problems

experienced by people diagnosed with thoracic cancer. 45 Treatments often are presented

as ‘labels’ or described as ‘processes’, where the black box containing the mechanisms of

action between the intervention target and the predicted change are not explored. 46, 47.

Theories are needed to identify the determinants in people newly diagnosed with thoracic

cancer that are amenable to specific rehabilitation interventions. The use of theory during the

initial development allowed us to explore and identify key concepts, causal assumptions and

potential mechanisms of impact by which intervention components may bring about the

changes needed to achieve the anticipated outcomes (See figure 1) 48, 49 The development of

this model of rehabilitation was underpinned by a theoretical framework comprising theories

of disease, illness and change. Theories of disease and illness support the identification of

potentially modifiable factors in the individual person receiving the rehabilitation in their

unique context. Theories of change predict and explain how interactions between the person

living with thoracic cancer, the rehabilitation components and how they are delivered may

influence the modifiable factors. 50

! Theories of disease, dysfunction and illness

o WHO International Classification of Diseases, 11th Revision (WHO ICD-11)51


o WHO International Classification of Functioning, Disability and Health (WHO-ICF) 9, 30

o Common Sense Model of Self-Regulation, 52

o Phenomenology’s of illness53-55

! Theories of change

o Rehabilitation theory: Wade’s Rehabilitation Process56)

o Behaviour change theory (Capability, Opportunity, Motivation- Model (COM-B)57)

This theoretical framework provides explanations for how a range of mechanisms of impact

can be targeted by tailored intervention components to achieve outcomes that are

meaningful to patients living with thoracic cancer. People with thoracic cancer commonly

experience multiple symptoms from diagnosis which may impact on physical, psychological

and emotional function and behaviours. These factors are influenced by each person’s

unique context. Their sociocultural beliefs around lung cancer, the presence of comorbidities,

prolonged diagnostic phase, cancer treatment options, age, and sociocultural beliefs around

lung cancer, stigma and smoking history may influence perceptions of the value of

rehabilitation for participants, their families and clinicians. The causal mechanisms underlying

these factors relate to natural progression of the disease in each individual (theories of

disease) and how each person experiences living with the disease (theories of illness).38

The World Health Organisation International Classifications of Functioning, Disability and

Health (WHO-ICF) provides a model for the classification of normal healthy functioning and

the interacting domains in which dysfunction and disability can occur following pathology or

health related changes in environmental and personal circumstances. Strengths of the model

are that it allows for the classification of intervention targets where there are interacting

impairments in body structures and function, activity limitations and restrictions to

participation. In addition, it has international recognition. However, it does not attempt to

identify interventions to address identified dysfunction or predict their effects. A significant

limitation of the model is that personal factors influencing function known to act as barriers to

participation in rehabilitation, such as attitudes, skills, beliefs and behaviour, have not been

classified.58, 59

Pathophysiological theories describe the mechanisms involved in dysfunction and disease

related symptoms commonly experienced by people with thoracic cancer, such as fatigue,

breathlessness and pain. These theories have explanatory power to predict functional

impairments and provide the mechanisms of impact for rehabilitation interventions such as


exercise or breathlessness management.60, 61 However they do not reliably predict how

people from engage with rehabilitation services or their experience of illness.

Theories of illness provide other potentially modifiable factors relating to the needs of people

living with advanced and progressive disease, where there is uncertainty if function can be

restored, and if so, for how long. This uncertainty may influence people’s motivation to

participate. Leventhal’s Common Sense Model of Self-Regulation 52 suggests that when

people are diagnosed with illness, they form a representation of the illness that influences

how they respond to it. Along with the name of the illness, people have perceptions based on

their previous knowledge and experiences about the likely causes and consequences of the

disease over time and the degree of control they, and their care providers, are likely to have

over the progression of disease process. This representation will influence how they live with

the disease. In addition, the presence or severity of disease and treatment related symptoms

is not linearly related to resulting distress or functional well-being.41, 62 Citing the work of Kay

Toombs, Havi Carel describes characteristics of serious, non-transient illness that informs

the context of rehabilitation services provided for people living with thoracic cancer. These

include five losses; loss of wholeness, certainty, control, freedom to act and familiar world. 53

(pg.42-43) People experiencing these losses may hold perceptions that rehabilitation has no

value and may even be burdensome.63 However Carel also describes how people

experience ‘reconfiguring… the ability to be’ 53 (pg82) when living with serious illness. These

insights from illness theory provide a theoretical foundation for the delivery of goal orientated

person-centred rehabilitation where recovery to pre-illness levels of functioning is not

possible or uncertain. They highlight that a patient may be experiencing profound losses or

be optimistic and hopeful in re-orientating normal life.29

Rehabilitation providers can support people to optimise the degree of control they have over

the consequences of living with the disease. Strategies that increase motivation and planning

to achieve meaningful goals foster hope and are associated with improved daily

functioning.64 For people on curative and palliative treatment pathways, supporting people to

set goals will include supporting them to make decisions about how much effort they want to

put into rehabilitation interventions in relation to the time they perceive they have left to live.

For example, if a patient is in existential distress, and is overwhelmed by fears of dying, they

may dramatically reduce their physical activities and increase their sedentary time even in

the absence of symptoms.32, 65 Family members who have previous experiences of people

living and dying from cancer may be motivated to promote rest to minimize ‘expected’


consequences of being active when ill.52 This change in usual behaviour may be reinforced

by larger socio-cultural factors in their community.66 In this scenario, the person may not

engage with an exercise based intervention that aims to reduce sedentary time. Other people

may have engaged in physical activities prior to diagnosis and be keen to continue or may

wish to start exercising as a positive response to diagnosis, yet find it hard to get advice and

support to know how to exercise safely through treatment. Assumptions should not be made

about the person’s priorities.

Theories of rehabilitation and behaviour change provide explanations for how interventions

achieve health related outcomes. Wade’s rehabilitation process30, 49 underpins the

components of rehabilitation interventions and includes factors relating to a person’s

impairments, activities, and participation in social life as well as individual their illness

experience and temporal context. Behavioural science 57 provides a model useful for

integrating theories of disease, dysfunction and illness with theories of change. For example,

improvements in illness perceptions, physiological or biochemical responses, such as

confidence to perform activities, respiratory ventilator load capacity balance or muscle

strengthening, require specific health related behaviours and skills to be enacted. Any

rehabilitation intervention to optimise functional well-being needs to be able to effectively

change both the behaviour and on doing so, influence perceptions, physiological or

biochemical response.

These theories support an approach to assessment that allows participants to give a

narrative of their own experience and immediate concerns and together form the conceptual

model for ‘Integrated Short-term Rehabilitation for Thoracic Cancer” (Figure 1). This should

lead to the selection of intervention components, potential mechanisms of impact and the

development of a goal orientated rehabilitation plan that is more acceptable to the

participant, and has a greater chance of being enacted.



Figure 1 Conceptual model for short-term integrated rehabilitation for thoracic cancer (adapted from

Wade’s Rehabilitation Process)[49] Top panel: Integrated Short Term Rehabilitation process. Bottom panel:

Detailed components relating to context, assessment, intervention, mechanisms of impact and outcomes

3.3 Modifiablefactorsandtheoreticalmechanismsofimpact

Modifiable factors are those contextual aspects within or relating to the person living with

thoracic cancer that can be changed through interaction with intervention components. They

are the factors targeted by the rehabilitation intervention to improve outcomes that are

meaningful for the person, their family and clinicians.

Modifiable factors/intervention targets

! Physical activity levels

! Participation in usual activities

! Task performance

! Function supporting/limiting knowledge, perceptions and beliefs (person, family/friends,

clinicians)

! Psychological well-being, including hope, confidence and control

! Structural factors limiting function (stairs, home location, access to resources)

! Muscle function

! Symptoms (including fatigue, cough, breathlessness, pain, sleep, dietary intake and

appetite)

Mechanisms of Impact (MoI) are the means by which an intervention causes change

resulting in an outcome. Theory is used to support understanding of what MoIs can be

expected to result in desired outcomes and therefore influence the selection of intervention

components and how they are delivered. The theoretical MoIs targeted by the intervention

involve physical, cognitive, emotional and social responses and resources and are listed in

figure 1, panel 2. Vignettes below in section 13 provide examples of possible

intervention/MoI/outcomes for participants with varying performance status and disease

stage.


4 Conception of the problem “Every time I tried—and failed—to do something that was too strenuous mybody stoically

registered the failure and thereafter avoided that action. Thechange was subtle, because this

happenedbystealth…IstoppedfeelingallthethingsIcouldnotdo.Theywerequietlyremoved

frommybodilyrepertoireinawaysosubtleIhardlynoticedit.(HaviCarel,“Illness,”p.40-41).29

4.1 Agentsofchange

! Person with thoracic cancer

! Person with thoracic cancer’s informal support network

! Expert rehabilitation practitioner (e.g. physiotherapist, occupational therapist, dietitian,

speech and language therapist, rehabilitation medicine physician, rehabilitation nurse or

rehabilitation psychologist) trained and competent to conduct assessment and deliver

intervention components contained within this intervention manual

! Wider health care team including oncology

4.2 Factorsinfluencingfunctionalwell-being(notexhaustive)

! Previous positive experiences of coping in challenging life situations

! Planned anti-cancer treatment

! Life circumstances: support available from family and community, sociocultural and

economic resources

! Lifestyle factors: diet, previous and current activity levels, smoking, occupation

! Illness related perceptions and beliefs

! Comorbidities

! Disease and treatment uncertainty


4.3 Factorsassociatedwithhealthrelatedbehaviourchange

Figure 2 COM-B Model of behaviour change (CC BY 2.0) [57]

! Capability:

o Psychological: perceptions, knowledge and beliefs, cognitive stamina

o Physical: skills, physical capacity, natural course of disease and response to anti-

cancer treatment

! Opportunity

o Physical: environment, time, resources, locations

o Social : interpersonal resources, social and cultural norms and expectations

! Motivation

o Automatic: habits, impulses, emotional reactions, desires, reflex responses

o Reflective: intentions, evaluations and plans


4.4 Caseformulation

The current function of each participant is conceptualised using the WHO-ICF domains; body

function impairments, activity limitations, participation restrictions and environmental factors.

As the personal factors domain of the WHO-ICF are not classified, both the Common Sense

Model of Self-Regulation52 and the phenomenological insights of care 53 are used to

conceptualise the participant’s illness perceptions and experience.

This includes:

! how the participation identifies and names their illness

! how they perceive the timeline for their disease and illness experience

! the consequences and disruption experienced or anticipated

! perceived causes of their illness experience

! perceived causes of changes in illness experience (including anticancer treatments

and rehabilitation)

! losses and changes experienced in bodily and social abilities.


5 Assessment of function “No-oneaskedmehowIfeelaboutmyillness…whendoctorsask‘howareyou?’theymean‘How

isyourbody?...Theywillnotwanttoknowhowmylifehaschangedbecauseofmyillness,how

theycouldmakeiteasierforme”.(HaviCarel,“Illness”p48).29

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


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


! It is driven by the participant’s goals, with use of actions plans and BCTs focusing on

what is important to each participant


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)


9 Session format and content

9.1 Formatfordelivery,numberandfrequencyofsessions

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


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.


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.


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-


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.


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

(https://www.kcl.ac.uk/cicelysaunders/research/studies/oacc/gas-booklet-2018-final.pdf)

11.3 BehaviourChangeTechniques

This intervention explicitly incorporates behaviour change techniques (BCTs) as intervention

components. These are the ‘observable, replicable, irreducible components of an

intervention designed to change behaviour.” 76 Use of a standardised taxonomy allows

providers to proactively select BCTs to support participant’s capability, opportunity and

motivation to maintain existing positive health behaviours or to adopt new ones. In addition,

use of standardised BCTs allows for more precision in reporting of intervention delivery. The

provider is required to consider not just the content of what is delivered, e.g. breathlessness

management strategies, but how it is delivered. In the example, the provider should indicate

if the participant was given instruction, a demonstration, and opportunity to practice,

equipment, feedback and information about the consequences of performing a

breathlessness management technique to support enactment when the provider is not

present. This level of detailed reporting may illuminate links between intervention

components, mechanisms of impact and outcomes 77 and more fully satisfies the

requirements of the TIDieR intervention reporting checklist and guide. 78 All providers will

receive training in the delivery of the BCTs used during intervention delivery (Table 3)

Table 3 Behaviour Change Techniques used in intervention delivery (BCTT vs1)79 Essential BCTs: Recommended BCTs

Social support* Graded tasks

Goal Setting (behaviour and/or outcome) Prompts/Cues

Action Planning Habit formation

Problem Solving Social support (practical and/or emotional)

Instruction on how to perform behaviours Reducing negative emotions

Demonstration of behaviours Adding objects to the environment

Behaviour practice Self-talk

Feedback on behaviour Conserving mental resources

Information about health consequences Focus on past success

Self-monitoring of behaviour Consider:

Verbal persuasion about capability Intervention intention ‘If … then…’ plans80


Review behaviour/outcome goals

*Motivational interviewing approach


11.4 RehabilitationComponents

11.4.1 Symptom self-management Breathlessness:

! Check current medical management (encourage reporting to usual health care team if

new symptom or new changes in symptom)

! Use relevant strategies from ‘Breathing Thinking Functioning’ model,

(https://www.cuh.nhs.uk/breathlessness-intervention-service-bis/resources)

! Consider offering: a hand held fan or walking aid

! Consider using Macmillan Breathlessness Resource Pack (DVD and booklet)

! Consider using a local or ‘Association of Chartered Physiotherapists in Respiratory

Care,’ ‘Coping with being short of breath’ leaflet

https://www.acprc.org.uk/Data/Publication_Downloads/GL-02HowtocopewithbeingSOB-

breathingex(1).pdf?date=05/02/2019%2013:39:07

Fatigue:

! see Macmillan rehabilitation fatigue management pathway

https://www.macmillan.org.uk/assets/macmillan-cancer-rehabilitation-pathways.pdf

! consider using local hospital trust, community based or Macmillan exercise resources

! Appetite and Nutrition: ! Discuss current diet, appetite and intake

! Screen for unintended weight loss and review management of any concerns (within

scope

of expertise).

! If reduced or insufficient intake for exercise prescription, use local information leaflets or

Macmillan Resources to support discussion and action plans to optimise nutritional

intake

! Signpost to local dietitian services where weight loss or reduced appetite and intake

require more support than self-management

https://www.macmillan.org.uk/information-and-support/coping/maintaining-a-healthy-

lifestyle/healthy-eating

Persistent Cough:


! Check current medical management is optimised

! Encourage participant to report to usual health care team if not previously medically

assessed (same day if signs of infection +/- high temperature +/- feels unwell)

! For a productive cough associated with chronic respiratory long-term conditions,

optimise active cycle of breathing techniques and inhaler techniques

https://www.acprc.org.uk/Data/Publication_Downloads/GL-

05ACBT(1).pdf?date=05/02/2019%2013:39:07

Pain:

! Check medical management is optimised

! See Macmillan rehabilitation pain management pathway

https://www.macmillan.org.uk/assets/macmillan-cancer-rehabilitation-pathways.pdf

! Address impact of pain on sleeping and resting postures and on movement

! Consider walking aids, purposeful activity, and exercise

Sleep:

! Check current medical management

! If unreported, encourage reporting to health care team

! Encourage sleep hygiene techniques

! Review sleeping position

! Consider simple relaxation techniques

! Signpost to other services (psychological support/relaxation/meditation)

11.4.2 Physical activity and exercise ! Identify participant’s previous physical activity and exercise habits

! Explore current preferences for optimising physical activity and exercise

! Explore concerns and potential benefits

! Identify and problem solve potential barriers

! Encourage ongoing participation in existing habitual physical activities with increased

frequency, intensity and duration where achievable and appropriate

! Introduce new achievable physical activities or exercises, encourage habit forming

strategies and use of social support to optimise participation

! Use of self as resistance and/or weights for strengthening exercises

! Use exercise information leaflet, (annotated and individualised as indicated):

o Local NHS Trust “exercise after a diagnosis of cancer” leaflet

o Bespoke personalised information sheet


o Chartered Society of Physiotherapy “Get up and go”

(https://www.csp.org.uk/publications/get-and-go-guide-staying-steady)

o Macmillan Cancer Support exercise information leaflets

https://be.macmillan.org.uk/be/s-840-move-more.aspx?ProductTypeFilterID=149

! Consider use of physical activity/exercise diary

! Identify local existing resources for ongoing support post intervention, i.e. local

rehabilitation services and community based physical activity and exercise groups

! See ‘cancer’ section at www.movingmedicine.ac.uk - an online evidence based resource

to support prescribing movement and physical activity.

11.4.3 Participation in Activities of Daily Living ! Identify any personal, domestic, work or social activities causing difficulty or concern

! Consider task performance practice, task adaptation and compensatory strategies, use

of equipment

! Consider planning, prioritising, pacing

! Consider social support

! Sign-post to other services when indicated (i.e. accessing local occupational therapy)

11.5 RehabilitationActionPlanSupport the participant to develop an action plan to achieve their stated goals. The

action plan should be held by participant, and they can be encouraged to share it with

their family and health care team. A copy of the discharge action plan, with participants

consent, should be sent to participant’s health care team and in their medical record at

end of intervention.

! Use participants own words

! Use problem solving and ‘if…then…’ plans80 to support action plan

! Document detailed action plan for each intervention component delivered

! Include specific information on when, where, how often strategy is to be undertake

! Document resources needed and how they are used (including social support,

equipment, contact details for sign-posted services)

12 Intervention fidelity

This manual supports the assessment and evaluation of intervention fidelity. It sets out in

detail aspects of the study design, processes and components to enable intervention

providers to deliver the intervention according to pre-specified criteria. This will allow for

process evaluation and evaluation of treatment fidelity 81, 82 during and following the trial.


12.1 InterventionprovidersIntervention providers will have expertise at level 4 (NICE Improving supportive and palliative

care for adults with cancer; chapter 10 page 140). 72 Each provider will be given a copy of

the intervention manual. They will receive training prior to the trial to ensure they are

confident to deliver the intervention according in line with the processes set out in this

manual. In addition, during the trial, the trial investigator will provide ongoing real time

supervision and support alongside assessment of skill maintenance.

12.2 InterventiondeliveryStructured documentation for recording intervention delivery will support recording of

intervention elements delivered, including process items (time to first appointment, location

and mode of delivery, duration and number of sessions) and rehabilitation component items

(symptoms self-management, physical activity, exercise and task performance/participation

strategies, behaviour change techniques, information resources, equipment).

Providers will be supported to reflect on intervention delivery, highlighting non-specific

treatment effects identified and any enablers or challenges to intervention delivery.

Treatment records will be reviewed during the trial alongside interviews with trial providers to

assess if essential and recommended components are being delivered and proscribed

components are not delivered.

12.3 TreatmentreceiptandenactmentTreatment receipt and enactment can be supported and enhanced by:

! Inviting participants to bring a person who provides them with support to be involved

during the intervention

! Demonstrate and support participants to practice the components of the rehabilitation

action plan

! Provision of tailored information leaflets, (where indicated, these should be individually

annotated), weblinks/apps/CDs/DVDs and/or equipment

! According to participant preference, use self-report diaries

! Supporting the participants to articulate that they understand the goals they have set

and how they plan to carry out their rehabilitation action plan in their home environment.


At follow up assessments, the provider will review the goals and action plan, problem solving

when indicated with the participant. Self-reporting and demonstration of techniques will be

supported by further practice and progression of graded tasks when indicated. This will be

documented in the structured study documentation.


13 Intervention vignettes The following three case vignettes provide examples of how this model of short-term

integrated rehabilitation can support people with differing needs following a diagnosis of

thoracic cancer. A conceptual model of the rehabilitation intervention is reproduced for each

vignette. Assessment components reveal contextual factors, functional concerns and

priorities that are unique to each person. Specific intervention contextual factors, intervention

components, mechanisms of impact, and outcomes are highlighted in each case study. They

demonstrates how assessment informs the selection of intervention components to address

the person’s concerns and priorities in their unique context. It is likely that changes in health

related outcomes will be achieved via multiple interacting mechanisms of impact.

13.1 Case1:61-year-oldwomanwithstageIVadenocarcinoma,PS1

Thoracic cancer problems and contextual factors:

A woman, aged 61, lives with spouse in a house with stairs. Spouse working. Diagnosed

with stage IV adenocarcinoma, T3N3M1, liver metastases. Performance status 1.

Commenced treatment with targeted therapy (afatinib). No comorbidities. Ex-smoker,

Previously no structured exercise, but busy working full time, family and social life. Currently

managing all personal but reduced domestic and social activities of daily living. No physically

limiting symptoms other than low appetite and nausea, side effect of treatment. Worsens

when preparing food, so reduced food intake. Doesn’t know what she can do to help herself.

Worried about ‘overdoing it’ and making herself worse. On sick leave from work (office

based). Bored at home, lack of structure to days, weeks and uncertain about the future.

Would like to go back to work but doesn’t know if this is possible. Aware of likely time frame

of disease and side effects of treatment but wishes to continue to live as normal for as long

as possible. Open to discussing possible consequences of disease and treatment over

coming months. Spouse not present- participant’s choice.

Intervention, three contacts, first and third face to face, second over telephone:

Discussed her expectations for cancer treatment, rehabilitation and what’s important to her

to support goal setting. Information about health and emotional consequences of optimising

physical activity, muscle function and nutrition given and discussed in terms of her context.

Discussed beliefs to inform choice of interventions she feels able to undertake, including

options to optimise fitness for treatment and to support return to work.

Short term goals include to be able to prepare meals and improve dietary intake and to do

an enjoyable moderate intensity physical activity every day by third rehabilitation session (4


weeks after enrolment). Longer term goals include to return to work, to tolerate and complete

cancer treatment

Action planning: Declined gym based formal exercise. Prefers to optimise usual activities

to support achieving goals. Agreed to plan and structure days with activities that are

meaningful and enjoyable, to agree and plan strategies to optimise nutritional intake, to

increase frequency of moderate intensity physical activity (including two home based

strengthening exercises), to reduce time spent sedentary.

Demonstrated, instructed and practised strengthening exercises and how to self-monitor

intensity. Instructed in technique for brisk walking and how to self-monitor moderate

intensity. Cancer Centre physical activity after cancer booklet provided. Safety factors

discussed.

Action plan to be achieved by end of three rehabilitation sessions:

! Meet with employer to discuss return to work

! Separate meal preparation from eating to see if improves appetite at mealtimes

! Grazing, 6 small meals per day, smaller plate

! Plan one meaningful and enjoyable activity each day, use of diary to structure week

! Incorporate brisk walking up to 30 minutes per day (in 10-minute episodes) at 5 days per

week in plan for week, where possible linked to enjoyable activities (i.e. brisk walk to and

from cinema)

! Strengthening exercises (sit to stand and wall press ups). To do 3 sets of ~8-15

repetitions- to point of comfortable fatigue, at same time each day (to encourage habit-

forming) 3 days per week, prompted by getting dressed (am), taking medication and

placing exercise booklet on table.

! Instructed and practiced how to self-monitor to achieve moderate intensity of exercise.

Problem solved potential barriers. Patient to ask spouse and friends to support weekly

activity plan. Does not foresee any problems calling manager at work as enjoys job and

misses it. To self-refer to see dietitian at cancer centre if no improvement in nausea and food

intake by second rehabilitation session.

Outcome:

Returned to work part-time. Recommenced cooking. Ongoing problems with nausea and

food intake. Met dietitian and has an ongoing plan for optimising nutrition. Joined walking

group with friend. Managing strengthening exercises 3 days per week. Brisk walking 3-4

days per week. Feeling stronger, reports ‘on her feet’ more with return to work, household

tasks and re-engaging with social life. Participant aware of how to self-monitor physical


function and has contact details for services available from oncology centre rehabilitation

team for new concerns arising during and post oncology treatment.

Figure 4 Case 1-Potential theory based mechanism of impact to optimise participation: 61 year old

woman with stage IV adenocarcinoma, PS1

13.2 Case2:76-year-oldmanwithextensivepleuralmesotheliomaPS2


Retired plumber, lives with wife in flat. No lift. One flight of stairs. Family supportive but live

far away. Sedentary prior to diagnosis. Osteoarthritis both knees, Type II diabetes,

hypertension. Diagnosed with extensive pleural mesothelioma after seeing GP with

increasing pain chest wall. Prior to that, worsening shortness of breath on exertion for

months that he related to ‘being unfit’ and ‘getting old’. Commenced carboplatin/pemetrexed

chemotherapy. Wife present during rehabilitation sessions. Low mood, fears for future,

worries about wife. Wife supportive, also anxious. Main concerns are breathlessness when

he exerts himself, including stairs, bathing, walking for more than 5- 10 minutes, getting up


from chair. Pain was a concern but now much improved since commenced treatment and

seen by palliative care team during recent admission for symptom control. Currently scores

breathlessness distress as 8/10. Can take 3-5 minutes to get breath back. Breathlessness at

rest is 0/10 but doesn’t feel like he gets “good breaths”.

Intervention, three contacts face to face:

Struggled to identify what matters to him now, other than not being a burden to his wife. On

further discussion, he recognises he wants to carry on being independent in personal care

and would like to be able to manage stairs outside flat more confidently so he can go out

from “time to time” with his wife in car (wife drives). He would like rehabilitation intervention

to help him be able to get his breath back more easily after he exerts himself. Currently, both

he and his wife fear he may get stuck on stairs so he avoids going out.

Immediate goal: to get breath back after exertion within 1-2 minutes and for breathlessness

distress score to reduce to 3-4/10 by third rehabilitation session.

Information given about health consequences of managing breathlessness more effectively,

being more physically active and strengthening exercises. Participant’s priority is to improve

management of breathlessness. Reports feeling overwhelmed when given too much

information. Prefers to keep rehabilitation session short. Instructed, demonstrated and

practiced breathing recovery techniques with participant and wife, including abdominal

breathing, pursed lip breathing and use of handheld fan (provided). Practiced technique to

get up from chair with reduced effort. Practised breathing techniques in sitting and after

walking (first session) and on stairs (second session). Advised to minimise duration of time

spent sitting, to try to gain benefits associated with increased physical activity. Participant

agreed and suggested he could achieve this by doing more around the flat, spending less

time sitting.

Identified potential barriers to techniques taught. Participant and his wife worry they’ll forget

techniques, therefore identified prompts and cues and information booklet provided to

support practice.

Action Plan:

! To practice breathing techniques, including use of handheld fan, when at rest and when

breathless

! Stand up (using new technique) and walk around flat when TV programmes end or when

adverts come on so he’s not sitting for more than 30-40 minutes

! To do at least one activity in the flat each day- i.e. dishes, make cups of tea for wife

! To go out in car at least once before next rehabilitation session

! Wife to prompt breathing and standing from chair techniques


At third session he accepted advice to use walking frame to minimise breathlessness when

walking (four wheeled-walker provided), so trips out are more manageable and enjoyable.

To keep in boot of car for trips out). Instructed and practiced safe use. During problem

solving- participant recognised that he may struggle to sustain motivation and confidence

managing breathlessness. Accepted information about local hospice outpatients for ongoing

rehabilitation support.

Outcome:

Breathlessness at worst score reduced to 4-5/10. Reports on his feet more in flat, more

involved in domestic activities. Using hand held fan and walking frame with good effect.

Feels safer on stairs, improved confidence to manage breathlessness. Considering self-

referral to local hospice for 8-week rehabilitation course.

Figure 3 Case 2- Potential theory-based mechanism of impact to optimise participation: 76-year-old

man with extensive pleural mesothelioma PS 2

13.3 Case3:57-year-oldmansquamouscellcarcinomastageI,PS0-1



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.


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


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Short term Integrated Rehabilitation for Thoracic Cancer … · 2019-12-03 · exercise based physical activity interventions in thoracic cancer, especially among patients scheduled