The Measurement of Treatment Burden after Stroke (TRUSTED)

Problem

Treatment burden is the workload of healthcare for people with long-term conditions and the impact of this work on wellbeing. Stroke survivors often experience arduous rehabilitation and long-term care needs, yet we lack a validated scale designed to measure treatment burden in stroke survivors. We have adapted a patient-reported measure (PRM) of treatment burden in multimorbidity, PETS (Patient Experience with Treatment and Self-Management), to create a stroke-specific measure, PETS-stroke. An examination of the content validity of PETS-stroke has already been completed with stroke survivors, resulting in a PRM that is relevant, important and comprehensible. In this study, we aim to examine construct validity, reliability and feasibility of PETS-stroke in a stroke survivor population, through a postal survey and telephone interviews.

Approach

We will recruit 340 community-dwelling stroke survivors within one year of stroke to evaluate the psychometric properties of the PETS-stroke scale through a postal survey. Participants will complete PETS-stroke at least 4 weeks after discharge from hospital. We will evaluate construct validity against 3 other patient reported measures (PRM’s): The Stroke Southampton Self-Management Questionnaire; The Satisfaction with Stroke Care Measure; and The Shortened Stroke Impact Scale. We will explore known-groups validity by exploring the association between treatment burden and socioeconomic deprivation as well as multimorbidity. We will evaluate test-retest reliability by readministering PETS-stroke to all participants 2 weeks after completion of the first questionnaire. Cronbach’s alpha will be used to examine internal consistency. Percentage of missing items and proportion of returned surveys will provide information on feasibility, and a subset of 30 participants will be interviewed by telephone after completion of the questionnaire to further explore this.

Findings

To date, 237 participants have returned our survey and 27 have been interviewed, with data analysis underway. Recruitment is on track. We will gain information on construct validity (confirmatory factor analysis, convergent validity, known-groups validity), reliability (internal consistency, test-retest), and feasibility of PETS-stroke. Preliminary findings from the interviews show that the measure is generally quick and easy to complete. A paper and pencil method suits most however some participants may benefit from telephone support. Clarification of whether to incorporate the workload of finding private healthcare or taking part in clinical trials when answering questions was requested. Participants with mild cognitive impairments benefitted from having someone help them to complete the survey by proxy such as an informal carer.

Consequences

Completion of this study will produce a validated measure of treatment burden in stroke. This scale will be used to identify stroke survivors at risk of high treatment burden and as an additional outcome measurement for use in clinical trials of stroke treatments.