Abstract
BackgroundTo assess reasons for continuing practice variation in the management of childhood nephrotic syndrome despite expert reviews and guidelines, we are conducting a longitudinal cohort study in children with glucocorticoid sensitive nephrotic syndrome.Objectives of this mid-study report are to describe patient and physician recruitment characteristics, glucocorticoid prescriptions, use of second line agents, biopsy practices, and adherence to study protocol.MethodsChildren with new onset nephrotic syndrome and providers are being recruited from all 12 pediatric nephrology centres across Canada with > 2½ years follow-up. Data collection points of observation are over a minimum 36 months. Details of prescribed glucocorticoids and of all second line agents used during treatment are being collected. All relapses are being recorded with time to urinary remission of proteinuria.ResultsTo date, 243 patients (57.1% male) from 12 centres were included. Median number of patients per centre was 29 (range 2–45), and median age of cohort was 7.3 (IQR 4.2) at enrollment. Forty-eight physicians were recruited, median 5 (range 2–8) per site. Median number of relapses per patient year of follow-up was 2.1 (IQR 4). Cumulative dose variability of glucocorticoids prescribed per episode of proteinuria and length of treatment was observed between participating centres.ConclusionThe Canadian pediatric nephrology community established a longitudinal childhood nephrotic syndrome cohort study that confirms ongoing practice variability. The study will help to evaluate its impact on patient outcomes, and facilitate clinical trial implementation in nephrotic syndrome.
Highlights
To assess reasons for continuing practice variation in the management of childhood nephrotic syndrome despite expert reviews and guidelines, we are conducting a longitudinal cohort study in children with glucocorticoid sensitive nephrotic syndrome
Childhood nephrotic syndrome is characterized by severe proteinuria and hypoalbuminemia, with edema as the most common presenting symptom [1, 2]
We reported variation in cumulative prednisone or prednisolone prescribed for episodes and length of episodes by site in mg/m2, when all patients within a site were grouped
Summary
To assess reasons for continuing practice variation in the management of childhood nephrotic syndrome despite expert reviews and guidelines, we are conducting a longitudinal cohort study in children with glucocorticoid sensitive nephrotic syndrome. Objectives of this mid-study report are to describe patient and physician recruitment characteristics, glucocorticoid prescriptions, use of second line agents, biopsy practices, and adherence to study protocol. Samuel et al BMC Nephrology (2019) 20:159 aspects of nephrotic syndrome care, including initial treatment, diagnostic approach and treatment of relapses. The impact of existing treatment variation on nephrotic syndrome relapse rates and other outcomes in children remains under studied. Without a careful longitudinal analysis and randomized controlled trials, providers cannot determine whether treatment protocol standardization may lead to improved patient and health care cost outcomes
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