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


Journal

Archives of disease in childhood
ISSN: 1468-2044
Titre abrégé: Arch Dis Child
Pays: England
ID NLM: 0372434

Informations de publication

Date de publication:
09 2021
Historique:
received: 27 07 2020
revised: 12 11 2020
accepted: 14 11 2020
pubmed: 15 12 2020
medline: 14 9 2021
entrez: 14 12 2020
Statut: ppublish

Résumé

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. A modified Delphi process. 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. 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. 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.

Identifiants

pubmed: 33310707
pii: archdischild-2020-320345
doi: 10.1136/archdischild-2020-320345
pmc: PMC8380885
doi:

Types de publication

Comparative Study Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

868-876

Informations de copyright

© 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.

Déclaration de conflit d'intérêts

Competing interests: JEC is a Swedish national representative for the PROMIS Health Organisation and DISABKIDS Quality-of-Life measurement system.

Références

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Auteurs

Beatrix 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.

Jessily P Ramirez (JP)

International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA.

Matthew Salt (M)

International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA.

Nick Sillett (N)

International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA.

Stacie N Myers (SN)

International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA.

Albie Alvarez-Cote (A)

International Consortium for Health Outcomes Measurements (ICHOM), Boston, Massachusetts, USA.

Nancy J Butcher (NJ)

Child Health Evaluative Sciences, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.

Luiz F Caneo (LF)

Heart Institute, University of Sao Paulo Medical School, Sao Paulo, Brazil.

Jaime A Cespedes (JA)

Fundacion Cardioinfantil- Instituto de Cardiologia, Universidad del Rosario, Bogota, Colombia.

John E Chaplin (JE)

Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, Göteborg, Sweden.

Kee Chong Ng (KC)

KK Women & Children's Hospital, Singapore.

Juan J García-García (JJ)

Hospital Sant Joan de Déu, Barcelona, Spain.

Jan A Hazelzet (JA)

Department of Public Health, Erasmus Medical Centre, Rotterdam, The Netherlands.

Anne F Klassen (AF)

Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.

Aida Luiza R Turquetto (ALR)

Heart Institute, University of Sao Paulo Medical School, Sao Paulo, Brazil.

Emma J Mew (EJ)

Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada.

Michael Morris (M)

Samuel Morris Foundation, Sydney, New South Wales, Australia.
Sydney Children's Hospital Networks, Sydney, New South Wales, Australia.

Martin Offringa (M)

Child Health Evaluative Sciences, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.

Matthew O'Meara (M)

NSW Health, Sydney, New South Wales, Australia.

James M Papp (JM)

Mindful Metrics, LLC, Cincinnati, Ohio, USA.

Carlos Rodrigo (C)

Pediatrics, Germans Trias i Pujol University Hospital, Badalona, Catalunya, Spain.
Universitat Autònoma de Barcelona Facultat de Medicina, Bellaterra, Catalunya, Spain.

Timothy L Switaj (TL)

U.S. Army, Boston, Massachusetts, USA.

Catalina Valencia Mayer (C)

Fundación CINDA - Universidad El Bosque, Bogotá, Colombia.

Kathy J Jenkins (KJ)

Boston Children's Hospital, Boston, Massachusetts, USA.

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Classifications MeSH