Please use this identifier to cite or link to this item: http://hdl.handle.net/2440/115598
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Type: Journal article
Title: Research priority setting in childhood chronic disease: a systematic review
Author: Odgers, H.
Tong, A.
Lopez-Vargas, P.
Davidson, A.
Jaffe, A.
McKenzie, A.
Pinkerton, R.
Wake, M.
Richmond, P.
Crowe, S.
Caldwell, P.
Hill, S.
Couper, J.
Haddad, S.
Kassai, B.
Craig, J.
Citation: Archives of Disease in Childhood, 2018; 103(10):942-951
Publisher: BMJ Publishing Group
Issue Date: 2018
ISSN: 0003-9888
1468-2044
Statement of
Responsibility: 
Harrison 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 Craig
Abstract: Objective: 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.
Keywords: chronic disease
Description: Published Online First 11 April 2018
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.
RMID: 0030085610
DOI: 10.1136/archdischild-2017-314631
Grant ID: http://purl.org/au-research/grants/nhmrc/1106716
Appears in Collections:Paediatrics publications

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