Deriving and validating a brief measure of treatment burden to assess person-centered healthcare quality in primary care: a multi-method study

• Main Authors: David T. Eton, Mark Linzer, Deborah H. Boehm, Catherine E. Vanderboom, Elizabeth A. Rogers, Marlene H. Frost, Mike Wambua, Miamoua Vang, Sara Poplau, Minji K. Lee, Roger T. Anderson
• Format: Article
• Language: English
• Published: BMC 2020-10-01
• Series: BMC Family Practice
• Subjects: Quality of health care; Primary health care; Multimorbidity; Patient-reported outcome measures; Patient-reported experience measures; Quality of life
• Online Access: http://link.springer.com/article/10.1186/s12875-020-01291-x

Abstract Background In primary care there is a need for more quality measures of person-centered outcomes, especially ones applicable to patients with multiple chronic conditions (MCCs). The aim of this study was to derive and validate a short-form version of the Patient Experience with Treatment and Self-management (PETS), an established measure of treatment burden, to help fill the gap in quality measurement. Methods Patient interviews (30) and provider surveys (30) were used to winnow items from the PETS (60 items) to a subset targeting person-centered care quality. Results were reviewed by a panel of healthcare providers and health-services researchers who finalized a pilot version. The Brief PETS was tested in surveys of 200 clinic and 200 community-dwelling MCC patients. Surveys containing the Brief PETS and additional measures (e.g., health status, medication adherence, quality of care, demographics) were administered at baseline and follow-up. Correlations and t-tests were used to assess validity, including responsiveness to change of the Brief PETS. Effect sizes (ES) were calculated on mean differences. Results Winnowing and panel review resulted in a 34-item Brief PETS pilot measure that was tested in the combined sample of 400 (mean age = 57.9 years, 50% female, 48% white, median number of conditions = 5). Reliability of most scales was acceptable (alpha > 0.70). Brief PETS scores were associated with age, income, health status, and quality of chronic illness care at baseline (P < .05; rho magnitude range: 0.16–0.66). Furthermore, Brief PETS scores differentiated groups based on marital and education status, presence/absence of a self-management routine, and optimal/suboptimal medication adherence (P < .05; ES range: 0.25–1.00). Declines in patient-reported physical or mental health status over time were associated with worsening PETS burden scores, while improvements were associated with improving PETS burden scores (P < .05; ES range: 0.04–0.44). Among clinic patients, 91% were willing to complete the Brief PETS as part of their clinic visits. Conclusions The Brief PETS (final version: 32 items) is a reliable and valid tool for assessing person-centered care quality related to treatment burden. It holds promise as a means of giving voice to patient concerns about the complexity of disease management.