Measuring outcomes in community-based stroke rehabilitation: enhancing inclusion and participation

Dr Helen Moore, Research AssociateSDHI webinar seriesWednesday 17th July 2013

About the Project• Funded by the Chief Scientist Office

• 18 month duration

• Project start date: 1st February 2012• End date: 31st July 2013

• Scotland-wide project

• Project team• Dr Thilo Kroll, University of Dundee (Principal Investigator)• Dr Helen Moore, University of Dundee• Dr Jacqui Morris, University of Dundee• Dr Frederike Van Wijck, Glasgow Caledonian University• Professor James Law, University of Newcastle• Dr Lisa Salisbury, University of Edinburgh• John Dennis, NHS Greater Glasgow and Clyde

Project Rationale• UK policy indicates that stroke rehabilitation needs to be evidence-

based, equitable and patient-centred and outcome measurement must reflect these values.

• However, converging evidence indicates a gap between UK policy and clinical practice in terms of stroke outcome assessment.

• People who had a stroke have mostly NOT been consulted on the relevance (usefulness and appropriateness) and accessibility (ability to complete the measure) of outcome measures that are used in community stroke rehabilitation.

• Community-based rehabilitation professionals may currently use measures that do not necessarily reflect patient priorities and accessibility requirements.

Function Participation

Impairment

- Muscle weakness

- Paralysis- Walking

difficulty

Participation restriction

- Getting in and out of office buildings

- Accessible transportation

- Lack of adapted exercise equipment

Time

Inpatient stroke rehabilitation Community-based rehabilitation

Person X Environment

Measures

Accessibility of Outcome Measures

• Accessibility: Can service users actively take part in outcome assessments?

• Little is known about acceptability of outcome measures to service users in terms of language, design and suitability.

• A review of 30 studies on stroke-specific patient reported outcome measures showed only 5 had addressed acceptability (Salter, Jutai, Zettler, Moses, Foley & Teasell, 2008).

• Inclusivity of outcome measures is poorly understood.

Project Aims

• Enable people with stroke to contribute to the development of outcome measures in community based rehabilitation

• Examine the rationale for the choice of outcome measures that are currently used by community based rehabilitation professionals

• Developing key recommendations for improving outcome assessment after stroke

Research Plan – 3 Phases• Phase 1 – Service user exploration• Interviews with people after stroke who are community-dwelling and

currently/recently engaged in community rehabilitation (Explore relevance and accessibility)

• Phase 2 – Rehabilitation professional’s current practice exploration• Web-based survey with senior rehabilitation professionals

(Physiotherapists, Occupational therapists, Speech and Language therapists) across all Scottish health boards.

• In-depth phone interviews (Explore use of outcome measures)

• Phase 3 – synthesis workshop• Half –day workshop bringing together rehabilitation professionals and

stroke survivors (Determine priorities and way forward)

Phase 1: Service User Interviews

• Research Question:

“Which are the most relevant outcomes that people with stroke want to achieve through community-based rehabilitation, and what are the requirements for ensuring that the process of outcome assessment is sufficiently inclusive?”

Who did we interview?◦ One-off interviews with 34 people after stroke who were currently

or were recently engaged in community stroke rehabilitation◦ 6 interviews used Talking Mats™

Service users from 8 health boards took part Fife, Grampian, Tayside, Lanarkshire, Lothian, Highland, Dumfries

and Galloway, GGC.

19 males, 15 females 16 under 65s, 17 over 65s (1 age unrecorded) 11 were 0-6 months post stroke, 12 were 7-12 months post

stroke and 7 were 12+ months post stroke

Phase 1: Service User Participants

• What matters? (relevance)• We asked people:• what matters to you in your life?• what do you most want to get out of your

rehabilitation?

• How should what matters be captured? (accessibility)• We asked people:• about how therapists looked at how they were

getting on in their rehabilitation?• for their suggestions on how they would like people

to look at how they are getting on.

Phase 1: Interview Topic Guide

Phase 1: Results• Audio recordings of the 28 non-Talking Mats interviews were

transcribed and coded using Framework Analysis (Ritchie & Spencer, 1994).

• 90 areas of importance to life and 55 rehabilitation goals were identified by service users.

• 74 of 90 life importance areas (82.2%) and 41 of 55 rehab goals (74.5%) could be mapped onto the 9 ICF activities and participation domains.

ICF Activity and Participation Domains

1. Self Care (9 excerpts coded)• e.g. caring for appearance, losing weight

“Res: I do sunbeds […] My next-door neighbour actually came to the door last week with a letter that went through her letterbox and she said sorry is Raymond in? I said what, it’s me. Oh I didn’t know.. didn’t notice me. I think that was a good thing” (male stroke survivor, age 45, 0-6 months post stroke)

2. Mobility (56 excerpts coded)• e.g. walking, moving around in different locations, driving

3. Interpersonal Interaction and Relationships (56 excerpts coded)• e.g. family relationships, informal social relationships

“Int: What’s important to you? Res: My two boys. Definitely. They come first.” (female stroke survivor, age 64, more than 12

months post stroke)

4. General Tasks and Demands (3 excerpts coded)• e.g. undertaking a single task, carrying out a daily routine

ICF Activity and Participation Domains (2)5. Community, Civic and Social life (51 excerpts coded)• e.g. recreation and leisure

6. Domestic life (31 excerpts)• e.g. shopping, preparing meals, doing housework

7. Communication (6 excerpts)• e.g. Speaking, Conversation

“My speech is obviously affected, that’s obvious, even I see it, I can see it what I am saying, I come to speak to somebody, blur blur that sort, I try to keep it going. That is trying to keep it low for the person I am speaking to. I mean it’s difficult. When I speak I try to speak properly. That’s for the person and pretending to, that doesn’t mean pretending.. But I like the person to understand what I am saying”. (Male stroke survivor, age 64, 7-12 months post stroke)

8. Learning and Applying knowledge (14 excerpts)• e.g. reading, writing, calculations

9. Major Life Areas• e.g. work, education, voluntary work (25 excerpts)

Items not mapped onto the ICF• 16/90 areas of importance and 14/55 rehab goals could not be mapped

onto the ICF activities and participation domains.

• 11 rehab goals relating to ‘body function’ domains of the ICF were identified: e.g. balance, strength, coordination, arm functioning.

• 10 areas of importance and 3 rehab goals reflected issues surrounding ‘dealing with life after stroke’

Independence confidence getting back to normal

worrying less adjusting life to stroke

Getting self together not wanting to feel sorry for self

Taking life at a reasonable pace spontaneity in participating

Talking Mats Interviews• 6 participants with aphasia (4 male, 2 female,

mean age 62, range 32-75 y) took part in Talking Mats interviews.

Talking Mats Interviews: Results

• Factors identified as important to participants after stroke in the wider interview study were endorsed by participants with aphasia.

• All 6 participants rated being able to get around, self-care and relationships with others as being important to them.

• The least important items were being able to multi-task and driving. Each was rated as important by one participant only. Communication, using the phone and writing messages were important for most but not all participants.

Stroke survivors interviewed had limited views on how what matters should be captured.

What seems most important is that measurement should be a positive experience for service users that:◦ is encouraging ◦ shows progress

12 excerpts from 8 respondents (out of 28) indicated some areas of outcome measurement that they felt were negative.

Some ways of measuring how service users are getting on:◦ were hard for stroke survivors to complete◦ were confusing as they were not culturally relevant◦ risked making people feel like they were being judged

How should what matters be captured?

Stroke survivor views

INT: “So, how do you find it when people are watching you doing things round the house? How is that for you?

RES: Very stressful, because you’re just wondering are they going to say something that I’m not doing right or if I’m not coping with it will they send me back to hospital or something like that. That’s one of my worst fears, being sent back to hospital or being sent in to some place that is not my own home. I would really stress out about that”. (Female stroke survivor, 67, 0-6 months post stroke)

Summary of Phase 1• Participation in meaningful activities and life roles are what matter

most to people once they are back home. Beyond function to meaning

• The ICF domains of activity and participation are a useful resource for mapping community rehabilitation goals

• Adjusting to life with stroke is another area of importance to service users.

• For outcome measurement to be relevant to service users it must address participation

• What is captured should provide encouragement to service users and should be culturally relevant and accessible

Phase 2: Therapist Current Practice Exploration

Research Questions:

• “Which outcome measures do rehabilitation professionals currently use in multi-disciplinary community-based stroke rehabilitation settings – and why?”• “Does the use of outcome measures differ based

on geographic location and practice characteristics such as location, model and case mix?”

• Web survey• 13 (out of 14 Scottish NHS Health

Boards - Western Isles no response)

• n=113 (55 Physiotherapists; 39 Occupational Therapists; 23 Speech and Language Therapists)

• 8 accessible rural; 31 accessible small town; 31 large urban area; 30 other urban; 2 remote area; 11 remote small town

• 31 up to 5 years of experience with stroke; 24 up to 10 years; 19 up to 15 years; 39 more than 15 years

• Addenbrooke’s Cognitive Examination (ACE-R)• Barthel Index• Berg Balance Scale (BBS)• Nine Hole Peg Test (NHPT) or other pegs• Rivermead Behavioural Memory Test (RBMT)• Rivermead Perceptual Assessment Battery (RPAB)• Ten Metre Walk Test (10MWT)• Therapy Outcome Measure (TOM)• Timed Up & Go Test (TUG)• Tinetti - balance / Tinetti - gait

Top 10 (Top 3) Outcome Measures (mentioned by more

than 20 therapists)

• Addenbrooke’s Cognitive Examination (ACE-R)• Barthel Index• Berg Balance Scale (BBS) PT• Nine Hole Peg Test (NHPT) or other pegs• Rivermead Behavioural Memory Test (RBMT) OT• Rivermead Perceptual Assessment Battery (RPAB) OT• Ten Metre Walk Test (10MWT)• Therapy Outcome Measure (TOM) SLT• Timed Up & Go Test (TUG)• Tinetti - balance / Tinetti - gait

Top 3 Outcome Measures by profession

5 main reasons for choosing the measure

1. They are relevant to patients’ goals (61.9%)2. They are easy to use (53.4%)3. There is a good evidence base for using the instrument

(50.8%)4. They are sensitive to change in patient performance

(48.3%)5. They are specific to the outcomes being measured

(45.8%)

Relevance to Patient Goals and Accessibility

• Despite relevance to patients’ goals being the primary driver in outcome measure selection, only 13.6% of therapists endorsed ‘the measure elicits the views of patients’ as within their top 5 reasons for selecting outcome measures.

• Accessibility was within the top 5 reasons for selecting an outcome measure for only 8.5% of respondents and a measure being aphasia friendly was within the top 5 reasons for selection for 2.5% of respondents.

5 main purposes for the measure

• To assess functional change in the patient• To plan treatment• To identify what the patient’s goals are• To enable the patient to see progress• To provide feedback to the patient/family

members/team

Satisfaction with outcome measures

• When asked about satisfaction with the range of measures available, 37.5% of respondents expressed dissatisfaction with the relevance of the range of measures available.

“Outcome measures are not patient-centred, and are rarely a reflection of the patient's goals. They tend to be prescriptive and focus on what a patient can or cannot do, rather than what they need or want to be able to do” (SLT)

What is NOT in current measures

• Community / outdoor mobility• Psychological adaptation rather than functional gains• Fatigue• Aphasia friendly measures• Driving• Community integration• Meaningful activity and quality of life• Level of carer support• Participation in society• Small but meaningful changes• Patient’s everyday needs / impact on daily lives• Return to work• Experience ‘measures’

Therapist Interviews• 13 therapists (5 PTs, 4 OTs, 4 SLTs) took part in 30

minute follow-up phone interviews to explore views on outcome measurement in more depth.

• Tension for therapists between best practice and realities of financial and service constraints, lack of time and environmental barriers to using measures.

• Tension between tailoring measures to patient-relevant goals and outcomes and ‘standardisation’ (choosing the same functional measure for everyone)

Summary of Phase 2• The findings show that practice, in line with policy, is shifting towards

greater patient-centredness in rehabilitation, with relevance being a key factor in selecting outcome measures.

• Despite relevance being a key factor in selecting outcome measures, over a third of therapists were dissatisfied with the range of measures available in terms of relevance to their patients. Therapists rarely felt that selecting measures which elicit patient viewpoints was most important.

• What therapists feel is missing in outcome measures is what service users report as being important to them.

• The findings highlight a gap between UK policy and practice in terms of inclusiveness, with accessibility of outcome measures not being a key factor in outcome measure selection.

Phase 3 – Synthesis Workshop• 5 service users who took part in phase 1 of the project • 8 community rehab therapists (PT, OT, SLT)

• Purpose of workshop• Present initial findings for group discussion• SUs and therapists rate importance of statements generated from analysis• Establish priorities moving forwards

• Method• Presented statements generated from answers to ‘what is important to

you?’ in service user interviews• Participants asked to rate the importance of statements 1-5 scale

• List of potential priorities provided to participants along with 3 fake notes - $200, $100, $50. Asked to place these next to their priorities

Top 3 outcome measurement priorities by ‘monetary investment’

• Be relevant to stroke survivors goals

• Encourage stroke survivors to reach their therapy goals

• Engage all stroke survivors irrespective of disability

Conclusions• Participation in meaningful life roles/activities and experience

of life after stroke are what matters most to service users once they have left the inpatient setting

• Complex picture for therapist’s current practice• Functional measures most used• Relevance to patients goals is of key importance• Accessibility not a major priority• Tension between what therapists want to do/are allowed to do

• Priorities for ways forward are outcome measures that are relevant, provide opportunities for encouragement and are accessible

What next…• Creation of new measures in line with what’s meaningful in the community in

terms of participation/dealing with life after stroke as:1. Not many participation measures in existence2. Not validated3. Not used routinely – functional measures dominate

• Measures should not be generic pencil/paper • Interactive• Accessible• Centred around providing motivation and/or encouragement• Smart measures – adaptable without losing rigour

• Discussion to be had in policy terms• Reduce pressure in terms of what needs reporting to managers• Acceptance of reporting more subjective, informal measures which capture patient

experience• Primary training/CPD on experiential and participation aspects of recovery and

measuring these