Title |
Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease
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Published in |
BMC Pediatrics, February 2015
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DOI | 10.1186/s12887-015-0323-x |
Pubmed ID | |
Authors |
Sara D Khangura, Maria D Karaceper, Yannis Trakadis, John J Mitchell, Pranesh Chakraborty, Kylie Tingley, Doug Coyle, Scott D Grosse, Jonathan B Kronick, Anne-Marie Laberge, Julian Little, Chitra Prasad, Lindsey Sikora, Komudi Siriwardena, Rebecca Sparkes, Kathy N Speechley, Sylvia Stockler, Brenda J Wilson, Kumanan Wilson, Reem Zayed, Beth K Potter |
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. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Canada | 3 | 60% |
Unknown | 2 | 40% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 4 | 80% |
Scientists | 1 | 20% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Canada | 1 | <1% |
Unknown | 144 | 99% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Bachelor | 20 | 14% |
Student > Ph. D. Student | 19 | 13% |
Researcher | 16 | 11% |
Student > Master | 16 | 11% |
Professor > Associate Professor | 11 | 8% |
Other | 27 | 19% |
Unknown | 36 | 25% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 34 | 23% |
Nursing and Health Professions | 14 | 10% |
Psychology | 12 | 8% |
Social Sciences | 11 | 8% |
Biochemistry, Genetics and Molecular Biology | 7 | 5% |
Other | 18 | 12% |
Unknown | 49 | 34% |