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The Canadian Childhood Nephrotic Syndrome (CHILDNEPH) project: Overview of design and methods
Canadian Journal of Kidney Health and Disease
  • Susan Samuel, University of Calgary
  • Shannon Scott, University of Alberta
  • Catherine Morgan, University of Alberta
  • Allison Dart, University of Manitoba
  • Cherry Mammen, The University of British Columbia
  • Rulan Parekh, University of Toronto
  • Alberto Nettel-Aguirre, University of Calgary
  • Allison Eddy, The University of British Columbia
  • Rachel Flynn, University of Alberta
  • Maury Pinsk, University of Alberta
  • Andrew Wade, University of Calgary
  • Steven Arora, McMaster University
  • Geneviéve Benoit, CHU Sainte-Justine - Le Centre Hospitalier Universitaire Mère-Enfant
  • Martin Bitzan, Université McGill
  • Robin Erickson, University of Saskatchewan
  • Janusz Feber, University of Ottawa
  • Guido Filler, Western University
  • Pavel Geier, University of Ottawa
  • Colette Girardin, Centre Hospitalier Universitaire de Sherbrooke
  • Silviu Grisaru, University of Calgary
  • James Tee, Dalhousie University
  • Kyle Kemp, University of Calgary
  • Michael Zappitelli, Université McGill
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Background: Nephrotic syndrome is a commonly acquired kidney disease in children that causes significant morbidity due to recurrent episodes of heavy proteinuria. The management of childhood nephrotic syndrome is known to be highly variable among physicians and care centres. Objectives: The primary objective of the study is to determine centre-, physician-, and patient-level characteristics associated with steroid exposure and length of steroid treatment. We will also determine the association of dose and duration of steroid treatment and time to first relapse as a secondary aim. An embedded qualitative study utilizing focus groups with health care providers will enrich the quantitative results by providing an understanding of the attitudes, beliefs and local contextual factors driving variation in care. Design: Mixed-methods study; prospective observational cohort (quantitative component), with additional semi-structured focus groups of healthcare professionals (qualitative component). Setting: National study, comprised of all 13 Canadian pediatric nephrology clinics. Patients: 400 patients under 18 years of age to be recruited over 2.5 years. Measurements: Steroid doses for all episodes (first presentation, first and subsequent relapses) tracked over course of the study. Physician and centre-level characteristics catalogued, with reasons for treatment preferences documented during focus groups. Methods: All patients tracked prospectively over the course of the study, with data comprising a prospective registry. One focus group at each site to enrich understanding of variation in care. Limitations: Contamination of treatment protocols between physicians may occur as a result of concurrent focus groups. Conclusions: Quantitative and qualitative results will be integrated at end of study and will collectively inform strategies for the development and implementation of standardized evidence-based protocols across centres.

Citation Information
Susan Samuel, Shannon Scott, Catherine Morgan, Allison Dart, et al.. "The Canadian Childhood Nephrotic Syndrome (CHILDNEPH) project: Overview of design and methods" Canadian Journal of Kidney Health and Disease Vol. 1 Iss. 1 (2014)
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