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dc.contributor.authorOdgers, H.en
dc.contributor.authorTong, A.en
dc.contributor.authorLopez-Vargas, P.en
dc.contributor.authorDavidson, A.en
dc.contributor.authorJaffe, A.en
dc.contributor.authorMcKenzie, A.en
dc.contributor.authorPinkerton, R.en
dc.contributor.authorWake, M.en
dc.contributor.authorRichmond, P.en
dc.contributor.authorCrowe, S.en
dc.contributor.authorCaldwell, P.en
dc.contributor.authorHill, S.en
dc.contributor.authorCouper, J.en
dc.contributor.authorHaddad, S.en
dc.contributor.authorKassai, B.en
dc.contributor.authorCraig, J.en
dc.identifier.citationArchives of Disease in Childhood, 2018; 103(10):942-951en
dc.descriptionPublished Online First 11 April 2018en
dc.description.abstractObjective: To evaluate research priority setting approaches in childhood chronic diseases and to describe the priorities of stakeholders including patients, caregivers/families and health professionals. Design: We conducted a systematic review of MEDLINE, Embase, PsycINFO and CINAHL from inception to 16 October 2016. Studies that elicited stakeholder priorities for paediatric chronic disease research were eligible for inclusion. Data on the prioritisation process were extracted using an appraisal checklist. Generated priorities were collated into common topic areas. Results: We identified 83 studies (n=15 722). Twenty (24%) studies involved parents/caregivers and four (5%) children. The top three health areas were cancer (11%), neurology (8%) and endocrine/metabolism (8%). Priority topic areas were treatment (78%), disease trajectory (48%), quality of life/psychosocial impact (48%), disease onset/prevention (43%), knowledge/self-management (33%), prevalence (30%), diagnostic methods (28%), access to healthcare (25%) and transition to adulthood (12%). The methods included workshops, Delphi techniques, surveys and focus groups/interviews. Specific methods for collecting and prioritising research topics were described in only 60% of studies. Most reviewed studies were conducted in high-income nations. Conclusions: Research priority setting activities in paediatric chronic disease cover many discipline areas and have elicited a broad range of topics. However, child/caregiver involvement is uncommon, and the methods often lack clarity. A systematic and explicit process that involves patients and families in partnership may help to inform a more patient and family-relevant research agenda in paediatric chronic disease.en
dc.description.statementofresponsibilityHarrison Lindsay Odgers, Allison Tong, Pamela Lopez-Vargas, Andrew Davidson, Adam Jaffe, Anne McKenzie, Ross Pinkerton, Melissa Wake, Peter Richmond, Sally Crowe, Patrina Ha Yuen Caldwell, Sophie Hill, Jennifer Couper, Suzy Haddad, Behrouz Kassai, Jonathan C Craigen
dc.publisherBMJ Publishing Groupen
dc.rights© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.en
dc.subjectchronic diseaseen
dc.titleResearch priority setting in childhood chronic disease: a systematic reviewen
dc.typeJournal articleen
pubs.library.collectionPaediatrics publicationsen
dc.identifier.orcidCouper, J. [0000-0003-4448-8629]en
Appears in Collections:Paediatrics publications

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