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- Title
Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden.
- Authors
Eton, David; Yost, Kathleen; Lai, Jin-shei; Ridgeway, Jennifer; Egginton, Jason; Rosedahl, Jordan; Linzer, Mark; Boehm, Deborah; Thakur, Azra; Poplau, Sara; Odell, Laura; Montori, Victor; May, Carl; Anderson, Roger; Eton, David T; Yost, Kathleen J; Ridgeway, Jennifer L; Egginton, Jason S; Rosedahl, Jordan K; Boehm, Deborah H
- Abstract
<bold>Purpose: </bold>The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden-the Patient Experience with Treatment and Self-management (PETS).<bold>Methods: </bold>A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation.<bold>Results: </bold>A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79-0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01).<bold>Conclusion: </bold>A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.
- Subjects
TREATMENT effectiveness; MEDICAL records; MEDICAL informatics; CUSTOMER satisfaction; MENTAL health; QUALITY of life; HEALTH self-care
- Publication
Quality of Life Research, 2017, Vol 26, Issue 2, p489
- ISSN
0962-9343
- Publication type
journal article
- DOI
10.1007/s11136-016-1397-0