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http://bura.brunel.ac.uk/handle/2438/15073
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DC Field | Value | Language |
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dc.contributor.author | Karaceper, MD | - |
dc.contributor.author | Trakadis, Y | - |
dc.contributor.author | Mitchell, JJ | - |
dc.contributor.author | Chakraborty, P | - |
dc.contributor.author | Tingley, K | - |
dc.contributor.author | Coyle, D | - |
dc.contributor.author | Grosse, SD | - |
dc.contributor.author | Kronick, JB | - |
dc.contributor.author | Laberge, A-M | - |
dc.contributor.author | Little, J | - |
dc.contributor.author | Prasad, C | - |
dc.contributor.author | Sikora, L | - |
dc.contributor.author | Siriwardena, K | - |
dc.contributor.author | Sparkes, R | - |
dc.contributor.author | Speechley, KN | - |
dc.contributor.author | Stockler, S | - |
dc.contributor.author | Wilson, BJ | - |
dc.contributor.author | Wilson, K | - |
dc.contributor.author | Zayed, R | - |
dc.contributor.author | Potter, BK | - |
dc.contributor.author | Canadian Inherited Metabolic Diseases Research Network | - |
dc.date.accessioned | 2017-08-24T13:15:06Z | - |
dc.date.available | 2015-02-13 | - |
dc.date.available | 2017-08-24T13:15:06Z | - |
dc.date.issued | 2015 | - |
dc.identifier.citation | BMC pediatrics, 2015, 15 pp. 7 - ? | en_US |
dc.identifier.issn | 1471-2431 | - |
dc.identifier.issn | 1471-2431 | - |
dc.identifier.uri | http://bura.brunel.ac.uk/handle/2438/15073 | - |
dc.description.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. | en_US |
dc.format | Electronic | - |
dc.format.extent | 7 - ? | - |
dc.language | eng | - |
dc.language.iso | en | en_US |
dc.subject | Canadian Inherited Metabolic Diseases Research Network | en_US |
dc.subject | Humans | en_US |
dc.subject | Chronic Disease | en_US |
dc.subject | Family | en_US |
dc.subject | Child | en_US |
dc.subject | Child Health Services | en_US |
dc.subject | Patient-Centered Care | en_US |
dc.subject | Outcome Assessment (Health Care) | en_US |
dc.title | Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease. | en_US |
dc.type | Article | en_US |
dc.identifier.doi | http://dx.doi.org/10.1186/s12887-015-0323-x | - |
dc.relation.isPartOf | BMC pediatrics | - |
pubs.publication-status | Published | - |
pubs.volume | 15 | - |
Appears in Collections: | Dept of Health Sciences Research Papers |
Files in This Item:
File | Description | Size | Format | |
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Fulltext.pdf | 805.71 kB | Adobe PDF | View/Open |
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