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Longitudinal medication adherence in children with nephrotic syndrome and association with disease outcomes
Cal Robinson1,2, Nowrin Aman2,3, Harshita Arora2
1Division of Nephrology, Hospital for Sick Children, Toronto, Ontario, Canada.
Insights
Medication non-adherence is common in children with nephrotic syndrome but does not appear to impact disease relapse, treatment changes, or hospitalizations. This finding suggests current adherence monitoring may need re-evaluation for this condition.
Area of Science:
- Pediatric Nephrology
- Pharmacological Adherence Research
- Chronic Disease Management
Background:
- Children with nephrotic syndrome face significant medication burdens and side effects, potentially leading to non-adherence.
- Understanding adherence patterns is crucial for optimizing disease control and preventing complications in pediatric nephrotic syndrome.
Purpose of the Study:
- To investigate longitudinal patterns of medication adherence in children with nephrotic syndrome.
- To determine the association between medication non-adherence and key disease outcomes, including relapse rates, treatment modifications, and hospitalizations.
Main Methods:
- Analysis of a prospective observational cohort of children (1-18 years) with nephrotic syndrome.
- Annual self-reported medication adherence assessment using the Medication Adherence Questionnaire (MAQ) over up to five years.
- Generalized linear mixed models used to evaluate associations between non-adherence (MAQ score ≥1) and subsequent outcomes.
Main Results:
- Medication non-adherence was reported by 31% of 735 children at least once, with rates remaining stable over five years.
- Non-adherence was not significantly associated with increased relapse rates (aRR 1.14), use of steroid-sparing medications (aOR 0.90), rituximab use (aOR 0.77), or hospitalizations (aOR 1.17).
Conclusions:
- Self-reported medication non-adherence is prevalent in approximately one-third of pediatric nephrotic syndrome patients.
- Current findings indicate that self-reported non-adherence does not adversely impact subsequent disease relapses, steroid-sparing treatment initiation, or hospitalizations in this cohort.
Background:
Children with nephrotic syndrome have a high medication burden and treatment-related side effects, which can contribute to non-adherence. Optimal medication adherence may reduce symptom burden, improve disease control and prevent complications. However, longitudinal patterns of medication adherence and associations with disease outcomes among children with nephrotic syndrome remain uncertain.
Methods:
We analysed data from Insight into Nephrotic Syndrome: Investigating Genes, Health, and Therapeutics, a prospective observational childhood nephrotic syndrome cohort. We included all children (1-18 years of age) with nephrotic syndrome diagnosed from 1996 to 2023 from the Greater Toronto and Hamilton Area, Canada, excluding congenital or secondary causes of nephrotic syndrome. Participants were followed annually with questionnaires for up to 5 years since study initiation. Medication adherence was self-reported by participants or parents using the Medication Adherence Questionnaire (MAQ). 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 1905 study visits among 735 children diagnosed with nephrotic syndrome [mean age at visit 8.7 years (standard deviation 4.3), 65% male, 30% frequently relapsing or steroid dependent, median 1 (interquartile range 0-3) prescribed medications]. Medication non-adherence (MAQ score ≥1) was reported at 367 (19%) study visits and 228 (31%) participants reported non-adherence at least once. Rates of non-adherence remained stable over 5 years of follow-up. Worse medication adherence was not significantly associated with subsequent relapse rates {adjusted relative rate 1.14 [95% confidence interval (CI) 0.97-1.34]}, use of steroid-sparing medication [adjusted odds ratio (OR) 0.90 (95% CI 0.61-1.32] or rituximab [adjusted OR 0.77 (95% CI 0.36-1.66)] or hospitalizations [adjusted OR 1.17 (95% CI 0.59-2.32)].
Conclusions:
Self-reported medication non-adherence occurs in one-third of children with nephrotic syndrome yet does not adversely affect subsequent relapses, steroid-sparing medication use or hospitalizations.
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