title: Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden.
abstract: 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).
  
  
  
  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.
  
  
  
  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).
  
  
  
  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.
authors: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. eton.david@mayo.edu.|Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. eton.david@mayo.edu.
authors: David T
authors: DT
authors: Eton
authors: Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.|Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors: Kathleen J
authors: KJ
authors: Yost
authors: Department of Medical Social Sciences, Northwestern University School of Medicine, 633 St. Clair, 19th Floor, Chicago, IL, USA.
authors: Jin-Shei
authors: JS
authors: Lai
authors: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.|Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors: Jennifer L
authors: JL
authors: Ridgeway
authors: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.|Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors: Jason S
authors: JS
authors: Egginton
authors: Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.|Division of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors: Jordan K
authors: JK
authors: Rosedahl
authors: Hennepin County Medical Center, 701 Park Avenue, Minneapolis, MN, USA.
authors: Mark
authors: M
authors: Linzer
authors: Minneapolis Medical Research Foundation, 701 Park Avenue, Minneapolis, MN, USA.
authors: Deborah H
authors: DH
authors: Boehm
authors: Amherst H. Wilder Foundation, 451 Lexington Parkway N, Saint Paul, MN, 55104, USA.
authors: Azra
authors: A
authors: Thakur
authors: Minneapolis Medical Research Foundation, 701 Park Avenue, Minneapolis, MN, USA.
authors: Sara
authors: S
authors: Poplau
authors: Pharmacy Services, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors: Laura
authors: L
authors: Odell
authors: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.|Knowledge Evaluation Research Unit, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors: Victor M
authors: VM
authors: Montori
authors: Knowledge Evaluation Research Unit, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.|Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors: Carl R
authors: CR
authors: May
authors: Department of Public Health Sciences, University of Virginia School of Medicine, 6203E, West Complex, Charlottesville, VA, USA.
authors: Roger T
authors: RT
authors: Anderson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life / Q000523:psychology*; D012648:Self Care / Q000379:methods*; D011795:Surveys and Questionnaires
keywords: Adherence; Multi-morbidity; Questionnaire; Self-management; Treatment burden; Validation