The Canadian Childhood Nephrotic Syndrome (CHILDNEPH) Project: overview of design and methods

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dc.contributor.authorSamuel, Susan
dc.contributor.authorScott, Shannon
dc.contributor.authorMorgan, Catherine
dc.contributor.authorDart, Allison
dc.contributor.authorMammen, Cherry
dc.contributor.authorParekh, Rulan
dc.contributor.authorNettel-Aguirre, Alberto
dc.contributor.authorEddy, Allison
dc.contributor.authorFlynn, Rachel
dc.contributor.authorPinsk, Maury
dc.contributor.authorWade, Andrew
dc.contributor.authorArora, Steven
dc.contributor.authorBenoit, Geneviève
dc.contributor.authorBitzan, Martin
dc.contributor.authorErickson, Robin
dc.contributor.authorFeber, Janusz
dc.contributor.authorFiller, Guido
dc.contributor.authorGeier, Pavel
dc.contributor.authorGirardin, Colette
dc.contributor.authorGrisaru, Silviu
dc.contributor.authorTee, James
dc.contributor.authorKemp, Kyle
dc.contributor.authorZappitelli, Michael
dc.date.accessioned2014-07-30T15:04:17Z
dc.date.available2014-07-30T15:04:17Z
dc.date.issued2014-07-22
dc.date.updated2014-07-30T15:04:20Z
dc.description.abstractAbstract 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.
dc.description.versionPeer Reviewed
dc.identifier.citationCanadian Journal of Kidney Health and Disease. 2014 Jul 22;1(1):17
dc.identifier.doihttp://dx.doi.org/10.1186/2054-3581-1-17
dc.identifier.urihttp://hdl.handle.net/1993/23728
dc.language.rfc3066en
dc.rightsopen accessen_US
dc.rights.holderSusan Samuel et al.; licensee BioMed Central Ltd.
dc.titleThe Canadian Childhood Nephrotic Syndrome (CHILDNEPH) Project: overview of design and methods
dc.typeJournal Article
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