Adaptation and content validation of a patient-reported measure of treatment burden for use in stroke survivors: the patient experience with treatment and self-management in stroke (PETS-stroke) measure

Abstract

Purpose

Stroke survivors often live with significant treatment burden yet our ability to examine this is limited by a lack of validated measurement instruments. We aimed to adapt the 60-item, 12-domain 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 with stroke survivors.

Materials and Methods

Step 1 – Adaptation of PETS to create PETS-stroke: a conceptual model of treatment burden in stroke was utilised to amend, remove or add items. Step 2 - Content validation: Fifteen stroke survivors in Scotland were recruited through stroke groups and primary care. Three rounds of five cognitive interviews were audio recorded and transcribed. Framework analysis was used to explore importance/relevance/clarity of PETS-stroke content. COSMIN reporting guidelines were followed.

Results

The adapted PETS-stroke had 34 items, spanning 13 domains; 10 items unchanged from PETS, 6 new and 18 amended. Interviews (n = 15) resulted in further changes to 19 items, including: instructions; wording; item location; answer options; and recall period.

Conclusions

PETS-stroke has content that is relevant, meaningful and comprehensible to stroke survivors. Content validity and reliability testing are now required. The validated tool will aid testing of tailored interventions to lessen treatment burden.

IMPLICATIONS FOR REHABILITATION

• Treatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists.

• We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke).

• The items in PETS-stroke are relevant and meaningful to people with stroke.

• Further testing will examine construct validity, reliability, and useability.

• This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden.

Keywords:

• Stroke
• treatment burden
• qualitative
• questionnaire
• face validity
• content validity
• patient reported measure

Author contributions

This study was conceptualised by KG, FM, DE, TQ, and LK. Data collection was completed by AS and KW. KW drafted the majority of the manuscript utilising findings from the first round of interviews written by AS. KG contributed to writing sections of the introduction, methods, results and discussion. All authors commented and critically revised drafts of the manuscript. All authors read and approved the final version of the manuscript for publication.

Disclosure statement

Prof Mair and Dr Gallacher are members of an international work group that promotes a move to “minimally disruptive medicine”. This work is unfunded. Prof Eton was responsible for the development and validation of the original PETS versions 1 and 2.

Data availability statement

Access to anonymised data can be discussed by contacting the authors. The Patient Experience with Treatment and Self-management (PETS), including all versions, is protected by copyright to the Mayo Foundation for Medical Education and Research, © 2016, 2020, all rights reserved. The PETS (general measure) and its scoring are available by contacting Dr Kathleen Yost ([email protected]).

Additional information

Funding

This work was supported by NHS Greater Glasgow and Clyde Endowment Fund GN19ST487; and the Stroke Association Clinical Lectureship TSA LECT 2017/01.