Development and Validation of a Kidney-Transplant Specific Measure of Treatment Burden

Elizabeth C. Lorenz, Tanya M. Petterson, Isabella Zaniletti, Kandace A. Lackore, Bradley K. Johnson, Martin L. Mai, Sumi S. Nair, Andrew J. Bentall, Kathleen J. Yost, David T. Eton

Research output: Contribution to journalArticlepeer-review


Background: Treatment burden refers to the work involved in managing one’s health and its impact on well-being and has been associated with nonadherence in patients with chronic illnesses. No kidney transplant (KT)-specific measure of treatment burden exists. The aim of this study was to develop a KT-specific supplement to the Patient Experience with Treatment and Self-Management (PETS), a general measure of treatment burden. Methods: After drafting and pretesting KT-specific survey items, we conducted a cross-sectional survey study involving KT recipients from Mayo Clinic in Minnesota, Arizona, and Florida. Exploratory factor analysis (EFA) was used to identify domains for scaling the KT-specific supplement. Construct and known-groups validity were determined. Results: Survey respondents (n = 167) had a mean age of 61 years (range 22–86) and received a KT on average 4.0 years ago. Three KT-specific scales were identified (transplant function, self-management, adverse effects). Higher scores on the KT-specific scales were correlated with higher PETS treatment burden, worse physical and mental health, and lower self-efficacy (p < 0.0001). Patients taking more medications reported higher transplant self-management burden. Conclusions: We developed a KT-specific supplement to the PETS general measure of treatment burden. Scores may help providers identify recipients at risk for nonadherence.

Original languageEnglish (US)
Article number301
JournalBMC Nephrology
Issue number1
StatePublished - Dec 2022


  • Adherence
  • Chronic Kidney Disease
  • Kidney Transplant
  • Quality of Life
  • Treatment Burden

ASJC Scopus subject areas

  • Nephrology


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