Validating the Patient Experience with Treatment and Self-Management (PETS), a patient-reported measure of treatment burden, in people with diabetes

Elizabeth A Rogers,1,2 Kathleen J Yost,3 Jordan K Rosedahl,3 Mark Linzer,4 Deborah H Boehm,5 Azra Thakur,5 Sara Poplau,5 Roger T Anderson,6 David T Eton3 1Department of Medicine, University of Minnesota Medical School, Minneapolis, MN, USA; 2Department of Pediatrics, University of Minnesota Medical School, Minneapolis, MN, USA; 3Department of Health Services Research, Mayo Clinic, Rochester, MN, USA; 4Department of Medicine, Hennepin County Medical Center, Minneapolis, MN, USA; 5Minneapolis Medical Research Foundation, Minneapolis, MN, USA; 6University of Virginia School of Medicine, Charlottesville, VA, USA Aims: To validate a comprehensive general measure of treatment burden, the Patient Experience with Treatment and Self-Management (PETS), in people with diabetes. Methods: We conducted a secondary analysis of a cross-sectional survey study with 120 people diagnosed with type 1 or type 2 diabetes and at least one additional chronic illness. Surveys included established patient-reported outcome measures and a 48-item version of the PETS, a new measure comprised of multi-item scales assessing the burden of chronic illness treatment and self-care as it relates to nine domains: medical information, medications, medical appointments, monitoring health, interpersonal challenges, health care expenses, difficulty with health care services, role activity limitations, and physical/mental exhaustion from self-management. Internal reliability of PETS scales was determined using Cronbach’s alpha. Construct validity was determined through correlation of PETS scores with established measures (measures of chronic condition distress, medication satisfaction, self-efficacy, and global well-being), and known-groups validity through comparisons of PETS scores across clinically distinct groups. In an exploratory test of predictive validity, step-wise regressions were used to determine which PETS scales were most associated with outcomes of chronic condition distress, overall physical and mental health, and medication adherence. Results: Respondents were 37–88 years old, 59% female, 29% non-white, and 67% college-educated. PETS scales showed good reliability (Cronbach’s alphas ≥0.74). Higher PETS scale scores (greater treatment burden) were correlated with more chronic condition distress, less medication convenience, lower self-efficacy, and worse general physical and mental health. Participants less (versus more) adherent to medications and those with more (versus fewer) health care financial difficulties had higher mean PETS scores. Medication burden was the scale that was most consistently associated with well-being and patient-reported adherence. Conclusion: The PETS is a reliable and valid measure for assessing perceived treatment burden in people coping with diabetes. Keywords: treatment burden, patient-reported measure, measurement, patient perspective, disease management&nbsp