What Research in Rehabilitation should and could be.. Sarah Dean

Transcription

1 What Research in Rehabilitation should and could be.. Making better use of theoretical frameworks e.g. International Classification of Functioning (ICF) in rehabilitation research Sarah Dean

2 Acknowledgements Sarah Dean s position at the University of Exeter Medical School, is supported by the National Institute for Health Research (NIHR) UK. However, the views expressed are those of the presenter and not necessarily those of the NIHR or the UK Department of Health. (Collaboration for Leadership in Applied Health Research & Care)

3 Acknowledgements Editors Sarah Dean, Richard Siegert & Will Taylor 2012 Authors William Levack Szilvia Geyh Claire Ballinger Jo Adams Julie Pryor

4 Outline of Talk Five core themes of textbook ICF and other frameworks Three projects: A Cochrane Review, the OPAL study and the ReTrain project Themes, theories or frameworks?

5 Five core themes of textbook ICF Interprofessional approach Processes in rehabilitation Outcome measures The person in context

6 World Health Organisation. (2001). International Classification of Functioning, Disability and Health: ICF. Geneva: World Health Organisation. ( Health condition (disorder or disease) Body Functions and Structures Activities Participation Environmental Factors Personal Factors

7 Health Condition: Body Functions & Structures: Fractured humerus. Pain. Decreased balance, leg muscle strength and endurance. Anxiety. Loss of short term memory. Loss of continence. Overweight. High blood sugar. Orthopaedic / Care of elderly ward team, Psycho-geriatrician, Psychologist, Pharmacist, Dietician, family. Intervention fracture management, medication, exercises, walking aids, dietary advice, memory aids. Outcomes Berg balance scale, muscle strength, shoulder ROM, leakage episodes / no of pads, memory test, pain scale, weight / BMI. Frail elderly Activity: Activities of daily living and self care. Walking. Sleeping. Community PTs, OTs, CPN, home carer team, GP, Pharmacist, Dietician, family. Intervention exercises and mobility aids, equipment and practice. Dietary advice. Memory aids and medication dispensing aids. Outcomes 10m timed walk or timed up and go; number of falls or near miss falls; medication adherence; Nottingham Activities of Daily Living scale; sleep scale. Participation: Restrictions to involvement in social, occupational or recreational life situations e.g. social clubs and visiting friends, church, shopping, community mobility, gardening. Family and friends, OTs, CPN. Intervention visits to day care centre, attending church and clubs, Outcomes extent to which such participation occurs, Community Integration Questionnaire, Quality of Life scales. Using ICF terminology as a mapping tool for Interprofessional Rehabilitation. From: Dean, Siegert & Taylor, Ch 7, 2012 Environmental Factors: Family, physical, social, occupational, attitudinal and other external contexts. Family and friends, OTs, PTs, CPN. Rehab programme includes: aids and equipment to enhance environmental accessibility of bungalow (internally and externally); support involvement of family. Outcomes measured by overcoming barriers, lack of increase in health and social services or number of hospital admissions. Personal Factors Age, gender, coping style, social background, education, past and current experiences, behaviour patterns, character, attitudes and beliefs, other internal contexts. Psychologist, CPN, family and friends. Rehabilitation to address these factors may include: counselling to improve self-confidence, decrease anxiety and assist with memory decline; support ability to self care; support in any transition to residential care. Outcomes measured by Perceived Self-Efficacy scale; Beck Depression Inventory.

8 Other Frameworks Medical Research Council, UK: Framework for developing and evaluating complex interventions. Craig et al 2008

9 Other frameworks: Behaviour Change Techniques (BCTs) BCT examples: Goal Setting and Biofeedback

10 Levack et al 2015

11 Compares usual (basic) pelvic floor exercises versus pelvic floor exercises with biofeedback Aim to intensify the exercise intervention for better adherence Suzanne Hagen and the OPAL team including Sarah Dean, Jean Hay-Smith, Carol Bugge & Aileen Grant

12 The ReTrain project Complex Intervention Language of ICF Some Behaviour Change Techniques (BCTs) in intervention Core themes guidance

13 Action for Rehabilitation from Neurological Injury: ARNI ARNI is an exciting development in the field of stroke rehabilitation: progressively recovering lost strength, balance and movement by functional taskrelated practice and stroke-specific resistance training techniques. designing self-recovery programmes with the aim of self-reliance. ARNI is a registered charity formed in response to the very real demand throughout the UK from stroke survivors, who uniformly state that they are 'stuck in limbo' after coming home from rehab.

14 Jim Does ARNI work?... Should I (Jim) be doing it? and is it worthwhile? Considerable patient and public involvement from the start and embedded throughout to project

15 Question generation prioritisation and adoption process: The ReTrain project is born 2009

16 Case Studies Estimate effect size Establish feasibility and acceptability Explore participant and instructor experience of the programme Intervention Mapping Identify and map key components of exercise interventions for stroke Pilot Group Classes (Brunel Team) Estimate effect size Establish feasibility and acceptability Explore participant and instructor experience of the programme Programme of completed Development Work Outcome Measures Establish participant burden Obtain stable estimates of scores Existing ARNI Delivery Liaison with those running ARNI programmes to gain information on Format Participants Outcomes Focus Groups Establish patient and carer expectations of exercise based rehabilitation

17 Retrain Development Work UK Stroke Forum 2012, 2013; World Congress Active Ageing 2012; Joining Forces ; Society for Research in Rehabilitation 2013; local seminars & newsletters

18 Protocol in press with BMJ-open, Sept 2016 August , 180

19 Community based Rehabilitation Training after Stroke (ReTrain) a pilot randomised controlled trial (RCT) Assoc Prof Sarah Dean (CI), UEMS Dr Anthony Shepherd, UEMS Dr Raff Calitri, UEMS Prof Anne Forster, University of Leeds Assoc Prof Anne Spencer, UEMS Dr Rhoda Allison, Torbay & South Devon Health & Care Trust Sarah Dean Prof Rod Taylor, UEMS Dr Martin James, RD&E Mrs Shirley Stevens, PPI representative Dr Meriel Norris, Brunel University Dr Leon Poltawski, UEMS

20 Rehabilitation Training after Stroke (ReTrain) - A Pilot Randomised Control Trial (RCT) Aim To evaluate the feasibility and acceptability of a community-based stroke rehabilitation programme, based on improving functionality The results will inform the decision to proceed to a definitive RCT Funded by the: This poster presents independent research funded by the Stroke Association and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed in this poster are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

21 Rehabilitation Training after Stroke (ReTrain) - A Pilot Randomised Control Trial (RCT) Objectives 1. Assess the feasibility and acceptability of recruitment, randomisation, allocation concealment and outcome assessment blinding procedures 2. Obtain an estimate of the outcome variance and retention rates 3. Confirm the feasibility of ReTrain, its acceptability to participants 4. Assess outcome measurement burden (including safety data) 5. Rehearse process evaluation methods, including intervention fidelity 6. Evaluate resource use Funded by the: This poster presents independent research funded by the Stroke Association and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed in this poster are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

22 Rehabilitation Training after Stroke (ReTrain): A Pilot Randomised Control Trial (RCT) Methods This is a Pilot RCT with 48 stroke survivors. Randomised to either a 24 week ReTrain programme or to a control group (advice booklet) Based in community venues in both Exeter and S. Devon Parallel economic and process evaluation (including interviews with participants and trainers) Funded by the: This poster presents independent research funded by the Stroke Association and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed in this poster are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

23 Rehabilitation Training after Stroke (ReTrain): A Pilot Randomised Control Trial (RCT) Patient inclusion / exclusion criteria Inclusion criteria include: Clinical diagnosis of stroke 1 month post discharge from NHS rehabilitation Willingness to be randomised to either group Capacity to consent Able to walk independently (with or without mobility aids; with selfreported difficulties climbing stairs or slopes/uneven surfaces) Exclusion criteria ᵡ Under 18 ᵡ Have contraindications to moderate exercise Funded by the: This poster presents independent research funded by the Stroke Association and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed in this poster are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

24 Rehabilitation Training after Stroke (ReTrain): A Pilot Randomised Control Trial (RCT) Raff Calitri, Anthony Shepherd, Leon Poltawski, Martin James, Rhoda Allison, Shirley Stevens, Meriel Norris, Anne Spencer, Rod Taylor, Anne Forster, Sarah Dean Contact the ReTrain team on; r.calitri@exeter.ac.uk Outcome measures 1. Rivermead mobility index 2. Timed get up and go 3. A modified patient specific functional scale 4. 7 day accelerometry (wrist worn) 5. Fatigue assessment scale 6. Recruitment and retention rates 7. Quality of Life (EQ 5D 5L, SF 12, stroke specific QoL and self efficacy) 8. Exercise beliefs and exercise self efficacy questionnaires 9. Carer burden index 10.Economic evaluation (i.e. service receipt) Funded by the: This poster presents independent research funded by the Stroke Association and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed in this poster are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

25 Rehabilitation Training after Stroke (ReTrain): A Pilot Randomised Control Trial (RCT) ReTrain programme ReTrain is based on the ARNI programme ( Main principles include improving functional mobility via personalised negotiated goals with exercise professionals ReTrain enhances function through; task related practice, strengthening training and teaches compensatory strategies The programme develops self management skills and instils a commitment for regular exercise Funded by the: This poster presents independent research funded by the Stroke Association and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed in this poster are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

26 Group training timeline 1:1 (assessment and programme plan) 1:1 (review and programme plan) 2:8 (1:4) 1:1 (Drop in sessions ) Consent W0 W1 W2 W3 W4 W5 W6 W7 W8 W9 W10 W11 W12 W13 W14 W15 W16 W17 W18 W19 W20 W21 W22 W23 W24 Month 1 Month 2 Month 3 Month 4 Month 5 Month 6 Funded by the: This poster presents independent research funded by the Stroke Association and supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed in this poster are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

27 The ReTrain project

28 Recruitment Timeline Cumulative number of patients consented maj 15 jun 15 jul 15 aug 15 sep 15 okt 15 nov 15 dec 15 jan 16 feb 16 mar 16 apr 16 maj 16 4 per month (previous research) 5 per month (expected) Actual Time

29 ReTrain results: reporting at the UK Stroke Forum November 2016 Recruitment summary: feasibility objective complete Recruited > 48 participants Recruited a month ahead of expectation Demonstration of the feasibility of recruitment will support an application to conduct definitive RCT

30 What Research in Rehabilitation should and could be.. Making better use of theory and frameworks?

31 Theoretical Frameworks Frameworks can and do help No one framework covers it all Beware too many theories & frameworks! Use them to structure your thinking and planning of a project or intervention

32 Core Themes as guiding principles Person in context: includes patient & public involvement (PPI), no longer a tick box exercise Processes: complex interventions and BCTs, these help but still more of the rehabilitation black box to unpack Outcomes: ICF guides choice, Patient Reported Outcome Measures (PROMs) are being developed but measurement science could be better Interprofessional approach: growing recognition that interdisciplinary research is as important as single specialist research ICF: the international language is useful, more work to do

33 Thank you Sarah Dean a href=" g d i Combas_Farmroyde_Braunton_Devon_England.html# "><img alt="" src=" cdn.tripadvisor.com/media/photo /06/10/8f/e1/putsborough beach to.jpg"/></a><br/>this photo of Combas Farm is courtesy of TripAdvisor