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.

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 REHABILITATIONTreatment 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.

Adaptation and Content Validation of a Patient-Reported Measure of Treatment Burden for use in Stroke Survivors (PETS-Stroke).

Context: Treatment burden is defined as the workload of healthcare for people with long-term conditions and the impact on wellbeing. Stroke survivors often live with considerable treatment burden because of high healthcare workload alongside deficiencies in care provision that can make navigating healthcare systems and managing health more difficult. Ways of measuring treatment burden after stroke are currently lacking. The Patient Experience with Treatment and Self-Management measure (PETS) is a 60-item patient-reported measure that was developed to measure treatment burden in a multi-morbid population. Although comprehensive, this is not a stroke-specific measure and therefore omits some burdens associated with stroke rehabilitation. Objective: Our aim was to adapt (PETS) (version 2.0, English), a patient-reported measure of treatment burden in multimorbidity, to create a stroke-specific measure (PETS-stroke), and to conduct content validity testing in a UK stroke survivor population. Study Design and analysis: 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 content of PETS-stroke. Framework analysis was used to explore responses. Setting: Community. Population studied: Stroke survivors. Instrument: Patient Experience with Treatment and Self-Management in stroke (PETS-stroke) scale. Results: Interviews (n=15) resulted in changes to the wording of instructions and items; location of items within the measure; answer options; and recall period. The final PETS-stroke tool has 34-items, spanning 13 domains. It includes 10 items unchanged from PETS, 6 new and 18 amended. Conclusions: The development of a systematic method of quantifying treatment burden from the perspective of stroke survivors will allow for the identification of patients at high risk of treatment burden and will aid the design and testing of tailored interventions aimed at lessening treatment burden.

Protocol for the development and validation of a patient reported measure (PRM) of treatment burden in stroke.

Background: Treatment burden is the workload of healthcare for people with long-term conditions and the impact on wellbeing. A validated measure of treatment burden after stroke is needed. We aim to adapt 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. We aim to examine content validity, construct validity, reliability and feasibility in a stroke survivor population. Methods: 1) Adaptation of 60-item PETS to PETS-stroke using a taxonomy of treatment burden. 2) Content validity testing through cognitive interviews that will explore the importance, relevance and clarity of each item. 3) Evaluation of scale psychometric properties through analysis of data from stroke survivors recruited via postal survey (n=340). Factor structure will be tested with confirmatory factor analysis and Cronbach's alpha will be used to index internal consistency. Construct validity will be tested against: 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, socioeconomic deprivation and multimorbidity. Test-retest reliability will be examined via re-administration after 2 weeks. Acceptability and feasibility of use will be explored via missing data rates and telephone interviews with 30 participants. Conclusions: We aim to create a validated PRM of treatment burden after stroke. PETS-stroke is designed for use as an outcome measure in clinical trials of stroke treatments and complex interventions to ascertain if treatments are workable for patients in the context of their everyday lives.

The Federation of Student Islamic Societies Programme to Challenge Mental Health Stigma in Muslim communities in Scotland: The FOSIS Glasgow Study.

INTRODUCTION: A recent study commissioned by the Scottish Government on the prevalence of mental disorders in Muslims in Scotland revealed that over 50% of the sample met the diagnostic criteria for a mental illness. Stigma is a major barrier to mental health services and despite the availability of effective treatment, many Muslims in Scotland with mental health difficulties continue to suffer in silence. The Federation of Student Islamic Societies (FOSIS) Scotland branch organized a mental health conference in Glasgow to improve Mental Health Literacy and challenge mental health related stigma in the Scottish Muslim community. The conference was comprised of: A counsellor with a background of Islamic psychology, a psychiatrist and an Imam (a Muslim religious leader). DESIGN: We conducted a single-arm, pre- post- comparison study on Muslims who attended the FOSIS mental health conference in Glasgow, Scotland. Validated psychometric stigma scales measuring knowledge (Mental Health Knowledge Schedule (MAKS)), attitudes (Community Attitudes towards the Mentally Ill (CAMI)) and behaviours (Reported and Intended Behaviour Scale (RIBS)) were administered on participants before and immediately after exposure to the programme. RESULTS: 34 out of the 55 participants who attended the conference responded (response rate 62%). 34/34 (100%) of the respondents were Muslim and the mean age was 22.7 years (Std. Dev. 6.04, min. 18, max. 49). There were no statistically significant changes in stigma across the domains of knowledge, attitude and behaviour in respondents following exposure to the event. CONCLUSION: Previous FOSIS anti-stigma conferences in England and Ireland featuring an Expert by Lived Experience were associated with statistically significant reductions in mental health related stigma. The results of the FOSIS Glasgow study supports the, 'Power of contact' with an Expert by Lived Experience at reducing mental health related stigma in the Muslim community. More robust research in this area is urgently required.