title: The Canadian Childhood Nephrotic Syndrome (CHILDNEPH) Project: overview of design and methods.
abstract: 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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  Mixed-methods study; prospective observational cohort (quantitative component), with additional semi-structured focus groups of healthcare professionals (qualitative component).
  
  
  METHODS
  National study, comprised of all 13 Canadian pediatric nephrology clinics.
  
  
  METHODS
  400 patients under 18 years of age to be recruited over 2.5 years.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: University of Calgary, Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, T3B 6A8 AB Canada.
authors.forename: Susan
authors.initials: S
authors.lastname: Samuel
authors.affiliation: University of Alberta, Edmonton, AB Canada.
authors.forename: Shannon
authors.initials: S
authors.lastname: Scott
authors.affiliation: University of Alberta, Edmonton, AB Canada.
authors.forename: Catherine
authors.initials: C
authors.lastname: Morgan
authors.affiliation: University of Manitoba, Winnipeg, MB Canada.
authors.forename: Allison
authors.initials: A
authors.lastname: Dart
authors.affiliation: University of British Columbia, Vancouver, BC Canada.
authors.forename: Cherry
authors.initials: C
authors.lastname: Mammen
authors.affiliation: University of Toronto, Toronto, ON Canada.
authors.forename: Rulan
authors.initials: R
authors.lastname: Parekh
authors.affiliation: University of Calgary, Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, T3B 6A8 AB Canada.
authors.forename: Alberto
authors.initials: A
authors.lastname: Nettel-Aguirre
authors.affiliation: University of British Columbia, Vancouver, BC Canada.
authors.forename: Allison
authors.initials: A
authors.lastname: Eddy
authors.affiliation: University of Alberta, Edmonton, AB Canada.
authors.forename: Rachel
authors.initials: R
authors.lastname: Flynn
authors.affiliation: University of Alberta, Edmonton, AB Canada.
authors.forename: Maury
authors.initials: M
authors.lastname: Pinsk
authors.affiliation: University of Calgary, Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, T3B 6A8 AB Canada.
authors.forename: Andrew
authors.initials: A
authors.lastname: Wade
authors.affiliation: McMaster University, Hamilton, ON Canada.
authors.forename: Steven
authors.initials: S
authors.lastname: Arora
authors.affiliation: Centre Hospitalier Universitaire de Sainte-Justine, Université de Montréal, Montreal, QC Canada.
authors.forename: Geneviève
authors.initials: G
authors.lastname: Benoit
authors.affiliation: McGill University, Montreal, QC Canada.
authors.forename: Martin
authors.initials: M
authors.lastname: Bitzan
authors.affiliation: University of Saskatchewan, Saskatoon, SK Canada.
authors.forename: Robin
authors.initials: R
authors.lastname: Erickson
authors.affiliation: University of Ottawa, Ottawa, ON Canada.
authors.forename: Janusz
authors.initials: J
authors.lastname: Feber
authors.affiliation: University of Western Ontario, London, ON Canada.
authors.forename: Guido
authors.initials: G
authors.lastname: Filler
authors.affiliation: University of Ottawa, Ottawa, ON Canada.
authors.forename: Pavel
authors.initials: P
authors.lastname: Geier
authors.affiliation: Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, QC Canada.
authors.forename: Colette
authors.initials: C
authors.lastname: Girardin
authors.affiliation: University of Calgary, Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, T3B 6A8 AB Canada.
authors.forename: Silviu
authors.initials: S
authors.lastname: Grisaru
authors.affiliation: Dalhousie University, Halifax, NS Canada.
authors.forename: James
authors.initials: J
authors.lastname: Tee
authors.affiliation: University of Calgary, Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, T3B 6A8 AB Canada.
authors.forename: Kyle
authors.initials: K
authors.lastname: Kemp
authors.affiliation: McGill University, Montreal, QC Canada.
authors.forename: Michael
authors.initials: M
authors.lastname: Zappitelli
keywords: Cohort study; Nephrotic syndrome; Practice variation; Qualitative methods