Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden

David T. Eton, Kathleen J. Yost, Jin shei Lai, Jennifer L. Ridgeway, Jason S. Egginton, Jordan K. Rosedahl, Mark Linzer, Deborah H. Boehm, Azra Thakur, Sara Poplau, Laura Odell, Victor M. Montori, Carl R. May, Roger T. Anderson

Research output: Contribution to journalArticle

36 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)489-503
Number of pages15
JournalQuality of Life Research
Volume26
Issue number2
DOIs
StatePublished - Feb 1 2017

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Keywords

  • Adherence
  • Multi-morbidity
  • Questionnaire
  • Self-management
  • Treatment burden
  • Validation

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Eton, D. T., Yost, K. J., Lai, J. S., Ridgeway, J. L., Egginton, J. S., Rosedahl, J. K., Linzer, M., Boehm, D. H., Thakur, A., Poplau, S., Odell, L., Montori, V. M., May, C. R., & Anderson, R. T. (2017). Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden. Quality of Life Research, 26(2), 489-503. https://doi.org/10.1007/s11136-016-1397-0