Validation and Feasibility of PETS-Stroke: A Patient-Reported Measure of Treatment Burden After Stroke.

Background: Treatment burden is the workload of health care for people with long-term conditions and the impact on wellbeing. A validated measure of treatment burden for use as an outcome measure in stroke trials is needed. We adapted a patient-reported measure of treatment burden in multimorbidity, Patient Experience With Treatment and Self-Management (PETS), version 2.0, to create a stroke-specific measure, PETS-stroke, and examined its psychometric properties.

Methods: We conducted an observational cohort study. Stroke and transient ischemic attack survivors were recruited between February 2022 to June 2023 from 10 hospitals in the United Kingdom and through the Scottish Health Research Register. Participants completed the PETS-stroke questionnaire along with 3 other patient-reported measures (the Stroke Southampton Self-Management Questionnaire, the Satisfaction With Stroke Care Measure, and the Shortened Stroke Impact Scale). We performed confirmatory factor analysis to test the factor structure of the PETS-stroke. We assessed Spearman rank correlations between PETS-stroke and other patient-reported measures to determine convergent validity. An intraclass correlation coefficient was performed to assess test-retest reliability. Proportions of missing data along with feedback from qualitative interviews were used to determine feasibility. T-tests were conducted to examine variations in PETS-stroke scores based on multimorbidity and socioeconomic factors.

Results: Three hundred eighty-one participants were included (mean age, 68.2 [SD, 11.2] years; female, 43.3%). The best fit was achieved with a 9-factor structure, and internal consistency was good (Omega values, 0.729-0.921). The factor loadings for the individual indicator items across 8 of the 9 domains were moderate to strong. All domains of PETS-stroke showed moderate to strong correlations with at least one other patient-reported measure. Test-retest reliability was good for all domains (intraclass correlation coefficient >0.7). Qualitative feedback on feasibility was positive: participants found the questionnaire to be easy and quick to complete, and missing data were within acceptable limits for 7 domains. PETS-stroke scores significantly differed based on multimorbidity in 3 domains and in 8 domains based on socioeconomic status.

Conclusions: Psychometric performance suggests that PETS-stroke is a valid and feasible measure of treatment burden after stroke.