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dc.contributor.authorKaraceper, MD-
dc.contributor.authorTrakadis, Y-
dc.contributor.authorMitchell, JJ-
dc.contributor.authorChakraborty, P-
dc.contributor.authorTingley, K-
dc.contributor.authorCoyle, D-
dc.contributor.authorGrosse, SD-
dc.contributor.authorKronick, JB-
dc.contributor.authorLaberge, A-M-
dc.contributor.authorLittle, J-
dc.contributor.authorPrasad, C-
dc.contributor.authorSikora, L-
dc.contributor.authorSiriwardena, K-
dc.contributor.authorSparkes, R-
dc.contributor.authorSpeechley, KN-
dc.contributor.authorStockler, S-
dc.contributor.authorWilson, BJ-
dc.contributor.authorWilson, K-
dc.contributor.authorZayed, R-
dc.contributor.authorPotter, BK-
dc.contributor.authorCanadian Inherited Metabolic Diseases Research Network-
dc.identifier.citationBMC pediatrics, 2015, 15 pp. 7 - ?en_US
dc.description.abstractImprovements in health care for children with chronic diseases must be informed by research that emphasizes outcomes of importance to patients and families. To support a program of research in the field of rare inborn errors of metabolism (IEM), we conducted a broad scoping review of primary studies that: (i) focused on chronic pediatric diseases similar to IEM in etiology or manifestations and in complexity of management; (ii) reported patient- and/or family-oriented outcomes; and (iii) measured these outcomes using self-administered tools.We developed a comprehensive review protocol and implemented an electronic search strategy to identify relevant citations in Medline, EMBASE, DARE and Cochrane. Two reviewers applied pre-specified criteria to titles/abstracts using a liberal accelerated approach. Articles eligible for full-text review were screened by two independent reviewers with discrepancies resolved by consensus. One researcher abstracted data on study characteristics, patient- and family-oriented outcomes, and self-administered measures. Data were validated by a second researcher.4,118 citations were screened with 304 articles included. Across all included reports, the most-represented diseases were diabetes (35%), cerebral palsy (23%) and epilepsy (18%). We identified 43 unique patient- and family-oriented outcomes from among five emergent domains, with mental health outcomes appearing most frequently. The studies reported the use of 405 independent self-administered measures of these outcomes.Patient- and family-oriented research investigating chronic pediatric diseases emphasizes mental health and appears to be relatively well-developed in the diabetes literature. Future research can build on this foundation while identifying additional outcomes that are priorities for patients and families.en_US
dc.format.extent7 - ?-
dc.subjectCanadian Inherited Metabolic Diseases Research Networken_US
dc.subjectChronic Diseaseen_US
dc.subjectChild Health Servicesen_US
dc.subjectPatient-Centered Careen_US
dc.subjectOutcome Assessment (Health Care)en_US
dc.titleScoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.en_US
dc.relation.isPartOfBMC pediatrics-
Appears in Collections:Dept of Clinical Sciences Research Papers

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