Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process.

Autor:	Algurén B; Department of Food and Nutrition, and Sport Science, Faculty of Education, University of Gothenburg, Göteborg, Sweden beatrix.alguren@gu.se.; Jönköping Academy for Improvement of Health and Welfare, School of Health Sciences, Jönköping University, Jönköping, Sweden.; International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA., Ramirez JP; International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA., Salt M; International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA., Sillett N; International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA., Myers SN; International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA., Alvarez-Cote A; International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA., Butcher NJ; Child Health Evaluative Sciences, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada., Caneo LF; Heart Institute, University of Sao Paulo Medical School, Sao Paulo, Brazil., Cespedes JA; Fundacion Cardioinfantil- Instituto de Cardiologia, Universidad del Rosario, Bogota, Colombia., Chaplin JE; Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, Göteborg, Sweden., Ng KC; KK Women & Children's Hospital, Singapore., García-García JJ; Hospital Sant Joan de Déu, Barcelona, Spain., Hazelzet JA; Department of Public Health, Erasmus Medical Centre, Rotterdam, The Netherlands., Klassen AF; Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada., Turquetto ALR; Heart Institute, University of Sao Paulo Medical School, Sao Paulo, Brazil., Mew EJ; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada., Morris M; Samuel Morris Foundation, Sydney, New South Wales, Australia.; Sydney Children's Hospital Networks, Sydney, New South Wales, Australia., Offringa M; Child Health Evaluative Sciences, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada., O'Meara M; NSW Health, Sydney, New South Wales, Australia., Papp JM; Mindful Metrics, LLC, Cincinnati, Ohio, USA., Rodrigo C; Pediatrics, Germans Trias i Pujol University Hospital, Badalona, Catalunya, Spain.; Universitat Autònoma de Barcelona Facultat de Medicina, Bellaterra, Catalunya, Spain., Switaj TL; U.S. Army, Boston, Massachusetts, USA., Valencia Mayer C; Fundación CINDA - Universidad El Bosque, Bogotá, Colombia., Jenkins KJ; Boston Children's Hospital, Boston, Massachusetts, USA.
Jazyk:	angličtina
Zdroj:	Archives of disease in childhood [Arch Dis Child] 2021 Sep; Vol. 106 (9), pp. 868-876. Date of Electronic Publication: 2020 Dec 11.
DOI:	10.1136/archdischild-2020-320345
Abstrakt:	Objective: To develop an Overall Pediatric Health Standard Set (OPH-SS) of outcome measures that captures what matters to young people and their families and recognising the biopsychosocial aspects of health for all children and adolescents regardless of health condition. Design: A modified Delphi process. Setting: The International Consortium for Health Outcomes Measurement convened an international Working Group (WG) comprised of 23 international experts from 12 countries in the field of paediatrics, family medicine, psychometrics as well as patient advisors. The WG participated in 11 video-conferences, through a modified Delphi process and 9 surveys between March 2018 and January 2020 consensus was reached on a final recommended health outcome standard set. By a literature review conducted in March 2018, 1136 articles were screened for clinician and patient-reported or proxy-reported outcomes. Further, 4315 clinical trials and 12 paediatric health surveys were scanned. Between November 2019 and January 2020, the final standard set was endorsed by a patient validation (n=270) and a health professional (n=51) survey. Results: From a total of 63 identified outcomes, consensus was formed on a standard set of outcome measures that comprises 10 patient-reported outcomes, 5 clinician-reported measures, and 6 case-mix variables. The four developmental age-specific packages (ie, 0-5, 6-12, 13-17, 18-24 years) include either five or six measures with an average time for completion of 20 min. Conclusions: The OPH-SS is a starting point to drive value-based paediatric healthcare delivery from a global perspective for enhancing child and adolescent physical health and psychosocial well-being. Competing Interests: Competing interests: JEC is a Swedish national representative for the PROMIS Health Organisation and DISABKIDS Quality-of-Life measurement system. (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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