Purpose: 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). Methods: 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. Results: 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). Conclusion: 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.
Bibliographical noteFunding Information:
The research reported in this manuscript was supported by the National Institute of Nursing Research of the National Institutes of Health (USA) under award number R21NR012984. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We thank Ms. Ann Harris and personnel in the Mayo Clinic Survey Research Center for formatting, distribution, and receipt of the survey battery.
© 2016, Springer International Publishing Switzerland.
- Treatment burden