Validation of the PETS-stroke-A patient reported measure (PRM) of treatment burden after stroke

Introduction Treatment burden is the workload of healthcare 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 (PRM) of treatment burden in multimorbidity, PETS (Patient Experience with Treatment and Self-Management version 2.0), to create a stroke-specific measure, PETS-stroke, and examined its psychometric properties. Patients and Methods We recruited stroke and transient ischaemic attack (TIA) survivors between Feb 2022-June 2023 from 10 hospitals in the UK and through the Scottish Health Research Register (SHARE). Participants completed the PETS-stroke questionnaire along with 3 other PRM’s (Stroke Southampton Self-Management Questionnaire, The Satisfaction with Stroke Care Measure, The Shortened Stroke Impact Scale). We performed confirmatory factor analysis to test the factor structure of the PETS-stroke. We assessed Spearman’s rank correlations between PETS-stroke and other PRMs to determine convergent validity. Intra-class 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. The best fit was achieved with a 9-factor structure and internal consistency was good (Omega values 0.729 to 0.921). The factor loadings for the individual indicator items across eight of the nine domains were moderate to strong. All domains of PETS-stroke showed moderate to strong correlations with at least one other PRM. Test-retest reliability was good for all domains (ICC>0.7). Qualitative feedback on feasibility was positive and missing data was 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. Discussion Psychometric performance suggests PETS-stroke is a highly promising measure of treatment burden after stroke.