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http://bura.brunel.ac.uk/handle/2438/15073
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. |
URI: | http://bura.brunel.ac.uk/handle/2438/15073 |
DOI: | http://dx.doi.org/10.1186/s12887-015-0323-x |
ISSN: | 1471-2431 1471-2431 |
Appears in Collections: | Dept of Health Sciences Research Papers |
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