591 - Longitudinal medication adherence in children with nephrotic syndrome: a prospective cohort study

Publication Number: 591.5604

Cal H. Robinson, The Hospital for Sick Children, Toronto, ON, Canada; Nowrin Aman, The Hospital for Sick Children, Toronto, ON, Canada; Aseel Al-Dmour, The Hospital for Sick Children, TORONTO, Ontario, ON, Canada; Josefina A. Brooke, the Hospital for Sick Children, Toronto, ON, Canada; Rahul Chanchlani, McMaster Children's Hospital, Hamilton, ON, Canada; Vaneet Dhillon, The Hospital for Sick Children, Toronto, ON, Canada; Mackenzie A. Garner, The Hospital for Sick Children, Toronto, ON, Canada; leo levin, University of Toronto Temerty Faculty of Medicine, Toronto, ON, Canada; Christoph Licht, The Hospital for Sick Children, Toronto, ON, Toronto, ON, Canada; Rachel J. Pearl, The Hospital for Sick Children, Toronto, ON, Canada; Seetha Radhakrishnan, The Hospital for Sick Children, Toronto, ON, Canada; Chia Wei Teoh, The Hospital for Sick Children, Toronto, ON, Canada; Jovanka Z. Vasilevska-Ristovska, The Hospital for Sick Children, Toronto, ON, Canada; Hubert Wong, scarborough health network, scarborough, ON, Canada; Rulan Parekh, Women's College Hospital, Toronto, ON, Canada

Background: Children with nephrotic syndrome have high medication burden and treatment-related side effects, which contribute to non-adherence. Optimal medication adherence can reduce symptom burden, improve disease control, and prevent complications. Longitudinal patterns of medication adherence and associations with disease outcomes among children with nephrotic syndrome remain uncertain.

Objective: Our aim was to evaluate longitudinal patterns of medication adherence and associations between medication non-adherence and disease outcomes in childhood nephrotic syndrome.

Design/Methods: We analyzed data from Insight into Nephrotic Syndrome: Investigating Genes, Health, and Therapeutics, a prospective observational childhood nephrotic syndrome cohort. We included all children (6 months - 18 years) with nephrotic syndrome diagnosed from 1996-2023 from the Greater Toronto and Hamilton Area, Canada, excluding congenital or secondary nephrotic syndrome. Participants were followed annually with questionnaires up to 5-years. Medication adherence was self-reported by participants or caregivers using the validated Medication Adherence Questionnaire (MAQ), with interpreter services for participants with language barriers. We evaluated the association between longitudinal medication non-adherence (MAQ score ≥1) and subsequent relapse rates, steroid-sparing medication initiation, and hospitalizations using generalized linear mixed models.

Results: We included 2067 study visits among 735 children (median 2 [IQR 1-3) MAQ questionnaires completed) diagnosed with nephrotic syndrome (mean age at visit 8.7 years [SD 4.3], 65% male, 30% frequently relapsing or steroid dependent, median number 1 [IQR 0-3] prescribed medications). Medication non-adherence (MAQ score ≥1) was reported at 367 (19%) of study visits and 228 (31%) participants ever reported non-adherence. Rates of non-adherence remained stable over annual follow-up for 5-years. Medication adherence was not significantly associated with initial steroid-resistant nephrotic syndrome classification, subsequent relapse rates, steroid-sparing medication or rituximab initiation, or hospitalizations (Table).

Conclusion(s): Self-reported medication non-adherence occurs in one-third of children with nephrotic syndrome but is not associated with steroid resistance, subsequent relapses, steroid-sparing medication use, or hospitalizations.

Table. Association between medication non-adherence and subsequent disease outcomes


Table. Association between medication non-adherence and subsequent disease outcomes