Determinants of medication adherence in childhood nephrotic syndrome and associations of adherence with clinical outcomes

• Type of Material: Article
• Authors: Chia-shi Wang, Emory University; Jonathan P Troost, University of Michigan; Yujie Wang, University of Michigan; Larry Greenbaum, Emory University; Keisha Gibson, University of North Carolina; Howard Trachtman, NYU School of Medicine, New York; Tarak Srivastava, Childrens Mercy Hosp; Kimberly Reidy, Montefiore Medical Center; Frederick Kaskel, Montefiore Medical Center, New York; Christine B Sethna, Cohen Children’s Medical Center of New York; Kevin Meyers, Childrens Hospital of Philadelphia; Katherine M Dell, Case Western Reserve University; Cheryi L Tran, Mayo Clinic, Rochester, MN, USA; Sangeeta Hingorani, University of Washington; Kevin V Lemley, Children’s Hospital-LA, Los Angeles, CA, USA; Jen-Jar Lin, Wake Forest University; Debbie S Gipson, University of Michigan
• Language: English
• Date: 2021-11-18
• Publisher: SPRINGER
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2021, IPNA
• Final Published Version (URL): http://dx.doi.org/10.1007/s00467-021-05176-8
• Title of Journal or Parent Work: PEDIATRIC NEPHROLOGY
• Volume: 37
• Issue: 7
• Start Page: 1585
• End Page: 1595
• Grant/Funding Information: The Nephrotic Syndrome Study Network Consortium (NEPTUNE), U54-DK-083912, is a part of the National Institutes of Health (NIH) Rare Disease Clinical Research Network (RDCRN), supported through a collaboration between the Office of Rare Diseases Research, National Center for Advancing Translational Sciences and the National Institute of Diabetes, Digestive, and Kidney Diseases (NIDDK). Additional funding and/or programmatic support for this project has also been provided by the University of Michigan, the NephCure Kidney International and the Halpin Foundation. Chia-shi Wang is supported by the NIH-NIDDK under Award Number K23DK118189. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. Jonathan Troost was supported in part by the National Center for Advancing Translational Sciences (NCATS) for the Michigan Institute for Clinical and Health Research (UL1TR002240).
• Keywords: GUIDELINES; Adherence; Child; Nephrotic syndrome; CHILDREN; Urology & Nephrology; Science & Technology; Life Sciences & Biomedicine; Pediatrics; Medication; Adolescent

Abstract

Background: Pediatric patients with nephrotic syndrome take medications long-term with significant toxicity and complex regimens, yet data on medication adherence are limited. Methods: In a multicenter observational study of patients with nephrotic syndrome, NEPTUNE (NCT01209000), we surveyed caregivers of patients <19 years old and adolescent patients on medication adherence during longitudinal follow-up beginning in June 2015. Data extraction was in October 2020. We described the proportion of nonadherent patients at first survey. Participant social and economic factors, condition-related factors, therapy-related factors, and patient-related factors were examined for relationships with nonadherence by generalized linear mixed models using the longitudinal data. In exploratory fashion, we assessed the relationship between adherence and subsequent steroid response classification by binary logistic regression and adherence with healthcare utilization by Poisson regression. Results: A total of 225 participants completed a median of 3 surveys during follow-up (IQR, 2–5), with a total of 743 surveys. Overall, 80 (36%) reported nonadherence with medications. In adjusted analysis, older age (per 1 year; OR 1.08; 95% CI, 1.03 1.12), lower maternal educational level (≥ high school vs. < high school; OR 0.47; 95% CI 0.25 to 0.89), and increased parent and self-identification of medications barriers (per 1 point; OR 1.57; 95% CI, 1.15–2.15) were significantly associated with nonadherence. No relationship between nonadherence and subsequent frequency of healthcare utilization was observed. A trend toward increased subsequent steroid resistance classification was seen with nonadherence, though not statistically significant. Conclusions: Medication nonadherence is common in pediatric nephrotic syndrome. Investigations into the use of surveys in the clinic setting to identify at-risk patients and ways to support families over time are needed. Graphical abstract: [Figure not available: see fulltext.]