Background/Aims: Lived experience involvement in clinical trials is considered best practice. This study aimed to understand the preferences and views on the acceptability of upper limb outcome measures from the perspectives of those with lived expertise of stroke and of caregiving.
Methods: Using a cross-sectional design, we distributed an online survey via social media, known networks and the Stroke Foundation (Australia). We included stroke survivors and caregivers of someone with a stroke; recruitment continues. Fifteen commonly used outcome measures were presented within the survey. Mean ranking was calculated to develop consensus about the appropriateness of each measure. Comments about how outcomes should be assessed were also recorded.
Results: To date, 28 responses have been received (89% stroke survivors, 11% caregivers, median 3.9 years post-stroke; 54% male). Measures experienced by survivors and reported to be useful for evaluating recovery included the Motor Assessment Scale (upper limb), movement analysis (sensors), goniometry and Box and Block Test. Biomarkers (blood/saliva) and Transcranial Magnetic Stimulation were rated the least favourably. More than half of participants would prefer weekly upper limb outcome measurement to monitor for incremental change (n=17). Full data analysis will be completed following recruitment.
Conclusion: We consider it essential for lived experience views to be taken into account when selecting measures that will define whether or not an intervention is effective. Providing insight into the views of stroke survivors regarding the utility of common outcome measures from published trials will be an important first step for clinical trial design.