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- Title
Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.
- Authors
Khangura, Sara D.; Karaceper, Maria D.; Trakadis, Yannis; Mitchell, John J.; Chakraborty, Pranesh; Tingley, Kylie; Coyle, Doug; Grosse, Scott D.; Kronick, Jonathan B.; Laberge, Anne-Marie; Little, Julian; Prasad, Chitra; Sikora, Lindsey; Siriwardena, Komudi; Sparkes, Rebecca; Speechley, Kathy N.; Stockler, Sylvia; Wilson, Brenda J.; Wilson, Kumanan; Zayed, Reem
- Abstract
Background: 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. Methods: 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. Results: 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. Conclusions: 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.
- Subjects
INBORN errors of metabolism; CHRONICALLY ill children; MEDICAL protocols; ELECTRONIC information resource searching; MEDICAL databases; HEALTH outcome assessment
- Publication
BMC Pediatrics, 2015, Vol 15, Issue 1, p1
- ISSN
1471-2431
- Publication type
Article
- DOI
10.1186/s12887-015-0323-x