Outcome measures in post-stroke arm rehabilitation trials: do existing measures capture outcomes that are important to stroke survivors, carers, and clinicians?
Julie Duncan Millar, Frederike van Wijck, Alex Pollock and 1 others
PMID 30646750WHAT IT FOUND
Stroke survivors prioritized independence and freedom, but the most common trial measures for arm rehabilitation failed to capture these outcomes.
Clinicians focused on everyday tasks and pain. Current research tools often miss what matters most to patients.
Key findings
01The three most frequently used measures in arm rehabilitation trials (Fugl-Meyer, Action Research Arm Test, and Modified Ashworth Scale) captured only one to three of the top ten outcomes important to patients and clinicians.
02Stroke survivors' highest priority, 'Independence, freedom and autonomy', was not captured by any of the ten most frequently used trial measures.
03Clinicians prioritized 'Everyday tasks' and 'Pain', but clinicians' focus on 'Everyday tasks' was not captured by the three most frequently used measures.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The qualitative data came only from participants in Scotland, which may limit generalizability to other populations. The study relied on a previous Cochrane overview to identify trials rather than conducting a new systematic search. The mapping of measures to outcomes was completed by one author, though a subset was double-checked by others. The study defined 'independence' broadly as freedom and autonomy, which may differ from clinical definitions of functional independence.
Declared interests
The authors declared no potential conflicts of interest. The work was supported by a PhD studentship from Glasgow Caledonian University and a minor research award from Chest Heart and Stroke Scotland.
The easy way to misread this
Do not assume that a lack of improvement on standard impairment tests like the Fugl-Meyer means the patient is not making progress in areas they value, such as independence or coping with daily tasks. These tests often fail to capture the outcomes that matter most to stroke survivors.