Research priority setting in childhood chronic disease: A systematic review

Harrison Lindsay Odgers, Allison Tong, Pamela A. Lopez-Vargas, Andrew Davidson, Adam Jaffé, Anne E. McKenzie, Charles Ross Pinkerton, Melissa Wake, Peter C. Richmond, Sally Crowe, Patrina Ha Caldwell, Sophie J. Hill, Jennifer J. Couper, Suzy Haddad, Behrouz Kassaï, Jonathan C. Craig

Research output: Contribution to journalReview article

7 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)942-951
Number of pages10
JournalArchives of Disease in Childhood
Volume103
Issue number10
DOIs
Publication statusPublished - Sep 2018
Externally publishedYes

Keywords

  • childhood chronic disease
  • paediatric chronic disease
  • caregivers

Fingerprint Dive into the research topics of 'Research priority setting in childhood chronic disease: A systematic review'. Together they form a unique fingerprint.

  • Cite this

    Odgers, H. L., Tong, A., Lopez-Vargas, P. A., Davidson, A., Jaffé, A., McKenzie, A. E., Pinkerton, C. R., Wake, M., Richmond, P. C., Crowe, S., Caldwell, P. H., Hill, S. J., Couper, J. J., Haddad, S., Kassaï, B., & Craig, J. C. (2018). Research priority setting in childhood chronic disease: A systematic review. Archives of Disease in Childhood, 103(10), 942-951. https://doi.org/10.1136/archdischild-2017-314631