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Title: Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.
Authors: Karaceper, MD
Trakadis, Y
Mitchell, JJ
Chakraborty, P
Tingley, K
Coyle, D
Grosse, SD
Kronick, JB
Laberge, A-M
Little, J
Prasad, C
Sikora, L
Siriwardena, K
Sparkes, R
Speechley, KN
Stockler, S
Wilson, BJ
Wilson, K
Zayed, R
Potter, BK
Canadian Inherited Metabolic Diseases Research Network
Keywords: Canadian Inherited Metabolic Diseases Research Network;Humans;Chronic Disease;Family;Child;Child Health Services;Patient-Centered Care;Outcome Assessment (Health Care)
Issue Date: 2015
Citation: BMC pediatrics, 2015, 15 pp. 7 - ?
Abstract: Improvements 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.
ISSN: 1471-2431
Appears in Collections:Dept of Clinical Sciences Research Papers

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