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Abstract: TH-PO146

Medication Adherence and Perceived Difficulties in Pediatric Nephrotic Syndrome

Session Information

Category: Glomerular

  • 1005 Clinical Glomerular Disorders


  • Wang, Chia- Shi, Emory University, Atlanta, Georgia, United States
  • Troost, Jonathan P., University of Michigan, Ann Arbor, Michigan, United States
  • Srivastava, Tarak, Children's Mercy Hospital, Kansas City, Missouri, United States
  • Weidemann, Darcy K., Children's Mercy Hospital, Kansas City, Missouri, United States
  • Greenbaum, Larry A., Emory University, Atlanta, Georgia, United States

Group or Team Name

  • cNEPTUNE Working Group

In children with nephrotic syndrome (NS), there is limited information on the prevalence of medication nonadherence and the role of perceived barriers in determining nonadherence.


We surveyed a large cohort of prevalent pediatric NS patients enrolled in an international, prospective study, the Nephrotic Syndrome Study Network (NEPTUNE). Self-reports for patients ages 8-18 years and caregiver-reports for patients ages 0-10 years were administered to prevalent patients between 2015-2016. The surveys contained 2 questions on whether medications were taken/missed and 17 questions on difficulties with medication ingestion, regimen adaptation, and disease frustration. All responses were reported in a 5-item Likert-type scale. Non-adherence was defined as responses of “not sure” or affirmative responses to not taking all medications or having missed medications. Patients were noted to have perceived barriers to medication adherence if an affirmative answer was given to one of the seventeen questions on medication difficulties. Association between perceived barriers and adherence was assessed by Chi-square test.


129 patients/caregivers completed medication adherence surveys, and 113 responded to medication difficulties surveys. Median time of study enrollment at time of survey was 521 days (interquartile range = 10-1221 days). 51 (39.5%) of patients were non-adherent to medications by self-/caregiver-report. 56 (49.6%) reported difficulties with ingestion, 45 (39.8%) with regimen adaptation, and 69 (61.1%) with disease frustration. 86 (76.1%) patients reported difficulties within at least one domain. Report of perceived barriers was not significantly associated with medication nonadherence (odds ratio = 1.63, 95% confidence interval = 0.64-4.14).


Self-/caregiver-reported medication nonadherence was common among pediatric NS patients. The majority of patients and caregivers reported experiencing barriers to adherence, including difficulties with medication ingestion, adaptation to medication regimen, or frustration with the disease. Prospective studies are needed to assess the effects of reported difficulties on long-term medication adherence and disease outcome.


  • NIDDK Support