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

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

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish (US)
Article number221
JournalBMC Family Practice
Issue number1
StatePublished - Oct 28 2020

Bibliographical note

Funding Information:
The study was funded by the National Institute of Nursing Research of the National Institutes of Health (USA) under award number R01NR015441, D. Eton (Principal Investigator). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Acknowledgements

Funding Information:
We thank Dr. Jennifer St. Sauver and Mr. Richard Pendegraft for their assistance in obtaining the REP sample. We are grateful to Ms. Ann Harris and Ms. Wendy Daniels at the Mayo Clinic Survey Research Center for formatting, distribution, and receipt of surveys. We also thank Ms. Kandace Lackore for database and analytic support and Ms. Bayly Bucknell for study coordination.

Publisher Copyright:
© 2020, The Author(s).


  • Multimorbidity
  • Patient-centered
  • Patient-reported experience measures
  • Patient-reported outcome measures
  • Primary health care
  • Quality of health care
  • Quality of life


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