Consumer Priorities for Upper-Extremity Outcome Assessments.

OBJECTIVE

To identify which upper-extremity outcome measures stroke survivors and caregivers consider meaningful and acceptable.

DESIGN

Cross-sectional online survey.

SETTING

Community-based survey distributed through stroke organizations and social media.

PARTICIPANTS

Thirty respondents (27 stroke survivors, 3 caregivers); median age 64 years (interquartile range=18); median 3.1 years post stroke (interquartile range=6.1).

INTERVENTIONS: Not applicable.

MAIN OUTCOME MEASURES: Participants rated their familiarity with, perceived relevance of, and preferences for 15 outcome assessments used to measure upper-extremity recovery. They also ranked preferences for timing, frequency, location, and duration of assessments in a hypothetical clinical trial.

RESULTS

Participants most valued clinician-assessed impairment measures (eg, range of motion, strength; 76.7%), task-oriented upper-extremity activity measures (70%), and movement analysis using sensors (66.7%). Measures reflecting neurophysiology or biological mechanisms (eg, biomarkers, transcranial magnetic stimulation) were perceived as less meaningful, particularly among participants with limited prior exposure to these measures. The Motor Assessment Scale, movement sensors, and range-of-motion assessments received higher relevance ratings than dexterity measures, such as the Box and Block Test and the 9-Hole Peg Test. In a hypothetical trial, weekly assessments during the intervention phase (63.0%) were preferred, with in-person assessment sessions, either in hospital outpatient clinics or at home, being the most acceptable. The preferred session duration for outcome assessment was 30-60 minutes; assessments with sessions ≥3 hours were the least acceptable.

CONCLUSIONS

Stroke survivors and caregivers prioritize upper-extremity impairment and activity-based upper-extremity assessments and prefer frequent, shorter, in‑person evaluations. Incorporating consumer preferences into clinical care and trial design may enhance the relevance, acceptability, and engagement of stroke survivors in future upper‑limb rehabilitation research.