1. Measuringoutcomesin community-based
strokerehabilitation:enhancinginclusion
andparticipation
Dr Helen Moore, Research Associate
SDHI webinar series
Wednesday 17th July 2013

2. 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

3. 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.

4. 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

5. 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.

6. 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

7. 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)

8. 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?”

9.  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

10. • 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

11. 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.

12. 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

13. ICFActivityand ParticipationDomains(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)

14. 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

15. Talking Mats Interviews
• 6 participants with aphasia (4 male, 2
female, mean age 62, range 32-75 y) took part in
Talking Mats interviews.

16. 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.

17.  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?

18. 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)

19. 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

20. 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?”

21. • 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

22. • 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)

23. • 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

24. 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%)

25. 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.

26. 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

27. 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)

28. 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’

29. 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)

30. 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.

31. 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

34. 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

35. 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

36. 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 existence
2. Not validated
3. 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