Adaptation and content validation of a patient-reported measure of treatment burden for use in stroke survivors (PETS-stroke): results of a qualitative cognitive interview study

Problem

Stroke survivors often live with significant treatment burden because of high healthcare workload or care deficiencies, which may negatively impact health outcomes. Measurement of treatment burden allows identification of those at high risk of burden and assessment of the effectiveness of interventions aimed at reducing it, however there is currently no validated patient-reported measure of treatment burden after stroke. Crucially, measures that have been developed for use in patients with other long-term conditions or multimorbidity omit important stroke-specific burdens. Our aim was to adapt the Patient Experience with Treatment and Self-Management (PETS) (version 2.0, English) patient-reported measure to create a stroke-specific measure (PETS-stroke), and to conduct content validity testing in a UK stroke survivor population.

Approach

PETS items were adapted to create PETS-stroke, using a previously developed conceptual model of treatment burden in stroke. Content validation involved three rounds of qualitative cognitive interviews with stroke survivors in Scotland recruited through stroke groups and primary care. Participants were asked for feedback on the importance/ relevance/ and clarity of the content of PETS-stroke. Framework analysis was used to explore responses and adapt the measure further. Interviews were conducted until no further changes to the measure were needed.

Findings

Interviews (n=15) resulted in changes to: wording of instructions/items; location of items; answer options; and recall period. The final PETS-stroke tool has 34-items, spanning 13 domains; 10 items unchanged from PETS, 6 new and 18 amended. Our findings suggest that the measure is best suited to measuring treatment burden in the first year after stroke, capturing the acute rehabilitative phase of recovery that is not sufficiently covered by existing PRMs.

Consequences

Our adapted stroke-specific treatment burden measure leverages the foundation of a previously developed and rigorously tested comprehensive general measure of treatment burden. PETS-stroke is now ready for further rigorous evaluation (construct validity and reliability testing) in a larger sample of stroke survivors. The development of a systematic method of quantifying treatment burden from the perspective of stroke survivors has the potential to aid the design and testing of tailored interventions aimed at lessening treatment burden.