Oral Presentation Smart Strokes Annual Scientific Meeting 2024

Measuring Arm and Hand Improvement after Stroke: What Matters Most to Experts with Lived Experience? (106884)

Lauren J Christie 1 2 3 , Brian A Beh 4 , Laura Jolliffe 5 6 , Ben Schelfhaut 7 , Clive Kempson 8 , Natasha A Lannin 9 10
  1. Allied Health Research Unit, St Vincent's Health Network Sydney, Darlinghurst, NSW, Australia
  2. Nursing Research Institute, St Vincent's Health Network Sydney, St Vincent's Hospital Melbourne & Australian Catholic University, Sydney, NSW, Australia
  3. School of Allied Health, Faculty of Health Sciences, Australian Catholic University, North Sydney, NSW, Australia
  4. Lived Experience Investigator, Sydney, NSW, Australia
  5. Allied Health Research, Peninsula Health, Frankston, Victoria, Australia
  6. Department of Occupational Therapy, Monash University, Frankston, Victoria, Australia
  7. Lived Experience Investigator, Tonbridge, England, United Kingdom
  8. Lived Experience Investigator, Melbourne, Victoria, Australia
  9. Brain Recovery and Rehabilitation Group, Department of Neuoscience, Monash University, Melbourne, Victoria, Australia
  10. Department of Occupational Therapy, Alfred Health, Melbourne, Victoria, Australia

Introduction: Lived experience involvement in clinical trials is considered best practice. The aim of this study was 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 anyone who had sustained a stroke or was a caregiver of someone with a stroke; recruitment continues. Fifteen commonly used outcome measures were presented to our experts.  Average 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). Priorities for measurement focused on impairments (e.g. strength; n=19, 76%) and common arm/hand activities (e.g. grasping a cup; n=18, 72%). Common outcome 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 preferred that measurement occurred weekly to monitor for incremental change (n=17). Full data analysis will be completed following recruitment.

Conclusion: We consider it mandatory 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 common outcome measures from published trials will be an important starting point for clinical trial design.

Relevance to clinical practice or patient experience: Involvement of stroke survivors and caregivers enabled us to identify outcome measures that are of importance to potential trial participants.