Outcome Measure Use in Community-Based Stroke Rehabilitation:

An Exploration of Therapists’ Current Practice in Scotland.

Thilo Kroll1, Helen Moore1, Jacqui Morris1, Lisa Salisbury2, Frederike van Wijck3, James Law 4, John Dennis5 Contact: t.kroll@ dundee.ac.uk

1 Social Dimensions of Health Institute, Universities of Dundee and St Andrews2 Nursing Studies/ Interdisciplinary Social Sciences in Health, University of Edinburgh, UK3 Institute for Applied Health Research, Glasgow Caledonian University, Glasgow4 School of Education, Communication and Language Sciences, Newcastle University, Newcastle 5 NHS Greater Glasgow and Clyde, Glasgow

1.INTRODUCTION

Stroke rehabilitation needs to be evidence-based, equitable and patient-centred and outcome measurement must reflect these values.

Relevance: To be patient-centred, rehabilitation should achieve outcomes that are of personal relevance to the service user. Outcome measures should therefore reflect the achievement of goals considered important by individuals with stroke.

Accessibility: To be equitable, outcome measurement should be sufficiently inclusive to engage people with a range of stroke-related disabilities.

Converging evidence indicates a gap between UK policy and clinical practice in terms of stroke outcome assessment.

Aim: to examine the rationale for outcome measure selection currently in use by UK rehabilitation professionals (i.e. PT, OT, SLT) in community stroke rehabilitation.

Aim: to explore the viewpoints of people with aphasia after stroke on outcome measures, to inform rehabilitation practice.

3. RESULTS

WHERE TO NEXT? We envisage that study findings will pave the way towards a more inclusive and relevant approach to assessment for this population in the community setting, and improve their quality of care.

5. CONCLUSION•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.

•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.

THE WIDER PROJECTThis cross-sectional Scotland-wide study has 3 phases:

Phase 1 Service user exploration:Semi-structured interviews with 33 stroke survivors (6 interviews used Talking Mats) to explore their views on what matters after stroke and on outcome assessment.

Phase 2 Therapy practice exploration:•survey of 120 AHPs about use of outcomes•follow-up phone interviews with 13 AHPs

Phase 3 Synthesis workshop:Concept mapping workshop bringing all participants together to explore findings and generate future recommendations.

REFERENCES1. Ritchie, J., Spencer, L., & O’Connor, W. (2004). Carrying out Qualitative Analysis. In J. Ritchie & J. Lewis (Eds.). Qualitative Research Practice (pp. 219-262). London: Sage.

2. METHODS

Web-based survey:Senior rehabilitation professionals (PTs, OTs, SLTs) across all 14 Scottish health boards were invited to participate in a web-based survey.

Questions covered what outcome measures are currently in use, the top 5 reasons for selecting measures, satisfaction with outcome measurement and demographic characteristics.

The survey was piloted with 6 rehabilitation professionals and refined via input from project reference group members. Survey Monkey was used to collect and conduct preliminary analysis of data.

Follow-up interviews:A sub-set of therapists who took part in the survey were also invited to take part in a 30 minute follow-up phone interview to explore outcome measurement use in more depth.

Framework analysis1 was used to analyse interviews.

113 therapists (51 PTs, 39 OTs, 23 SLTs) completed the survey and 13 therapists took part in interviews.

The MOST COMMONLY USED instruments are:PTs: Berg Balance Scale (80.4%), Tinetti Balance (74.5%), Tinetti Gait (68.6%)OTs: Rivermead Behavioural Memory Test (48.7%), Barthel Index (46.1%)SLTs: Therapy Outcome Measure (52.2%), Frenchay Aphasia Screening Test (30.4%), non-validated (21.7%)9.9% of therapists are using locally developed measures.

The TOP 5 reasons for selecting which measure to use are:•They are relevant to patients’ goals (n=68; 60.2%)•They are easy to use (n=59; 52.2%)•There is a good evidence base for using the instrument (n=53; 46.9%)•They are sensitive to change in patient performance (n=51; 45.1%)•They are specific to the outcomes being measured (n=49; 43.4%)

Accessibility was within the top 5 reasons for selecting anoutcome measure for only 8.5% of respondents and ameasure being aphasia friendly was within the top 5reasons for selection for 2.5% of respondents.

Despite relevance to patients’ goals being the primarydriver in outcome measure selection, only 13.6% oftherapists endorsed ‘the measure elicits the views ofpatients’ as within their top 5 reasons for selectingoutcome measures.

When asked about satisfaction with the range of measuresavailable, 37.5% of respondents expressed dissatisfactionwith 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)

Interviews highlighted the tension for therapists between best practice and systems constraints, such as difficulty accessing measures due to financial constraints, lack of time and environmental barriers to using measures.

What matters to people after stroke? Using an innovative communication framework to involve people with aphasia in interviews

about stroke rehabilitation

1.INTRODUCTION

People with communication disabilities, including people with aphasia after stroke may find it challenging to communicate what are meaningful outcomes in community stroke rehabilitation

Moreover, the views of people with severe communication impairments are rarely considered in health and rehabilitation-focused research.

Including the views of those with severe communication impairment is critical to gain a comprehensive understanding of their priorities within rehabilitation and their views on which outcomes are meaningful.  Aim: to explore the viewpoints of people with aphasia after stroke on what matters to them most to inform community rehabilitation practice.

3. A COMPLETED TALKING MAT

4. RESULTS

WHERE TO NEXT? We envisage that study findings will pave the way towards a more inclusive and relevant approach to assessment for this population in the community setting, and improve their quality of care.

2. METHOD

Participants with aphasia, currently engaged in community stroke rehabilitation across Scotland, were recruited. This study used Talking Mats™ 1, a communication framework and speech therapy support tool, which represents discussion topics pictorially as symbols placed along a visual scale on a mat.

Talking Mats were used to adapt the format of interviews previously conducted with a larger group of stroke participants without aphasia, as part of phase 1 of this Scotland-wide study (see right-hand panel of this poster). All participants were asked:

Symbols were generated on the basis of previous responses from project interviewees and the issues most assessed by therapists who participated in phase 2 of the study (i.e. balance and gait).

Symbols were placed on one mat with a 3-point top-scale,composed of ‘Important’, ‘I’m not sure’ and ‘Not important’ ratings.

Participants were encouraged to add their own symbols whilst generating the mat if issues that were important to them were not included in the pre-prepared symbols selection.

6 participants with aphasia (4 male, 2 female, mean age 62, range 32-75 y) took part in Talking Mats interviews. Factors identified as important to participants after stroke in the wider interview study were endorsed by participants with aphasia. These factors can be mapped onto the 9 WHO ICF participation domains2.

What is important? All 6 participants rated being able to get around, self-care and relationships with others as being important to them, as illustrated in the following quote:

What is not important? 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. Interestingly, the two items assessed most often by therapists (i.e. balance and gait), were each rated as important by one participant only.

When completing the Talking Mat, items rated as ‘not important’ to participants were sometimes closely linked to the areas of reduced physical and communicative function. 5. CONCLUSION•Views of people with aphasia on what matters most to them in their rehabilitation may differ from therapists’ views.

•Talking Mats™ is a useful tool in eliciting the views of people with aphasia about what matters most to them after stroke.

•The use of Talking Mats™ to answer the question “what is important to you in your life” may miss the complex relationship between importance of participation in a life role and the barriers participants face in performing that role. Downgrading “importance” may serve a self protective function. It will be important for therapists to tease out areas of actual importance from areas in which there are participation barriers when discussing rehabilitation goals.

THE WIDER PROJECT CONTEXTThis Scotland-wide study has 3 phases:

Phase 1 Service user exploration:Semi-structured interviews with 34 stroke survivors to explore their views on what matters after stroke and on outcome assessment.

Phase 2 Therapy practice exploration:•survey of 113 Rehabilitation Professionals about outcome us•follow-up phone interviews with 13 AHPs

Phase 3 Synthesis workshop:Concept mapping workshop bringing all participants together to explore findings and generate future recommendations.

REFERENCESMurphy J & Boa S. (2012) Using the WHO-ICF with Talking Mats as a goal setting tool. AAC Journal 28(1) 52-60.World Health Organisation (2001). International Classification of Functioning, Disability and Health.

Int: How about relationships? Are they important to

your life?

Participant: Well, they’ve always been good to us really, we’ve always had

strong […] family are always there

[SU places symbol at ‘important’].

What is important to you in your life?

Thilo Kroll1, Jacqui Morris1, Helen Moore1, Frederike van Wijck2, Lisa Salisbury3, James Law 4, John Dennis5, Contact: t.kroll@ dundee.ac.uk

1 Social Dimensions of Health Institute, Universities of Dundee and St Andrews2 Institute for Applied Health Research, Glasgow Caledonian University, Glasgow3 Nursing Studies/ Interdisciplinary Social Sciences in Health, University of Edinburgh, UK4 School of Education, Communication and Language Sciences, Newcastle University, Newcastle5 NHS Greater Glasgow and Clyde, Glasgow