Research priority setting in childhood chronic disease: a systematic review

Harrison Lindsay Odgers^{1

2}, Allison Tong^{1

2}, Pamela Lopez-Vargas^{2

3}, Andrew Davidson^{4

5

6}, Adam Jaffe^{7

8}, Anne McKenzie⁹, Ross Pinkerton¹⁰, Melissa Wake^{4

6

11}, Peter Richmond^{12

13}, Sally Crowe¹⁴, Patrina Ha Yuen Caldwell^{2

15

16}, Sophie Hill¹⁷, Jennifer Couper^{18

19}, Suzy Haddad²⁰, Behrouz Kassai^{2

21}, Jonathan C Craig^{1

2}

Affiliations

¹ Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ Kid's Research Institute, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
⁴ Department of Paediatrics, University of Melbourne, Melbourne, Victoria, France.
⁵ Department of Anaesthesiology, Royal Children's Hospital, Melbourne, Victoria, Australia.
⁶ Murdoch Children's Research Institute, Parkville, Victoria, Australia.
⁷ Department of Respiratory Medicine, The Sydney Children's Hospital Network, Sydney, New South Wales, Australia.
⁸ Discipline of Paediatrics, The University of New South Wales, Sydney, New South Wales, Australia.
⁹ Western Australian Health Translation Network, The University of Western Australia, Perth, Western Australia, Australia.
¹⁰ Department of Oncology, Lady Cilento Children's Hospital, South Brisbane, Queensland, Australia.
¹¹ Department of Paediatrics, The Liggins Institute, The University of Auckland, Auckland, New Zealand.
¹² Division of Paediatrics, School of Medicine, The University of Western Australia, Perth, Western Australia, Australia.
¹³ Departments of General Paediatrics and Immunology, Princess Margaret Hospital for Children, Perth, Western Australia, Australia.
¹⁴ Crowe Associated Ltd, Oxon, UK.
¹⁵ Discipline of Paediatrics and Child Health, University of Sydney, Sydney, New South Wales, Australia.
¹⁶ Department of Nephrology, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
¹⁷ Center for Health Communication and Participation, La Trobe University, Melbourne, Victoria, Australia.
¹⁸ Department of Endocrinology and Diabetes, Women's and Children's Hospital, Adelaide, South Australia, Australia.
¹⁹ Robinson Research Institute, University of Adelaide, Adelaide, South Australia, Australia.
²⁰ Patient and Carer Representative, Sydney, New South Wales, Australia.
²¹ Centre d'Investigation Clinique de Lyon, Lyon, France.

PMID: 29643102
DOI: 10.1136/archdischild-2017-314631

Research priority setting in childhood chronic disease: a systematic review

Harrison Lindsay Odgers et al. Arch Dis Child. 2018 Oct.

. 2018 Oct;103(10):942-951.

doi: 10.1136/archdischild-2017-314631. Epub 2018 Apr 11.

Authors

Affiliations

¹ Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ Kid's Research Institute, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
⁴ Department of Paediatrics, University of Melbourne, Melbourne, Victoria, France.
⁵ Department of Anaesthesiology, Royal Children's Hospital, Melbourne, Victoria, Australia.
⁶ Murdoch Children's Research Institute, Parkville, Victoria, Australia.
⁷ Department of Respiratory Medicine, The Sydney Children's Hospital Network, Sydney, New South Wales, Australia.
⁸ Discipline of Paediatrics, The University of New South Wales, Sydney, New South Wales, Australia.
⁹ Western Australian Health Translation Network, The University of Western Australia, Perth, Western Australia, Australia.
¹⁰ Department of Oncology, Lady Cilento Children's Hospital, South Brisbane, Queensland, Australia.
¹¹ Department of Paediatrics, The Liggins Institute, The University of Auckland, Auckland, New Zealand.
¹² Division of Paediatrics, School of Medicine, The University of Western Australia, Perth, Western Australia, Australia.
¹³ Departments of General Paediatrics and Immunology, Princess Margaret Hospital for Children, Perth, Western Australia, Australia.
¹⁴ Crowe Associated Ltd, Oxon, UK.
¹⁵ Discipline of Paediatrics and Child Health, University of Sydney, Sydney, New South Wales, Australia.
¹⁶ Department of Nephrology, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
¹⁷ Center for Health Communication and Participation, La Trobe University, Melbourne, Victoria, Australia.
¹⁸ Department of Endocrinology and Diabetes, Women's and Children's Hospital, Adelaide, South Australia, Australia.
¹⁹ Robinson Research Institute, University of Adelaide, Adelaide, South Australia, Australia.
²⁰ Patient and Carer Representative, Sydney, New South Wales, Australia.
²¹ Centre d'Investigation Clinique de Lyon, Lyon, France.

PMID: 29643102
DOI: 10.1136/archdischild-2017-314631

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; outcomes research; patient perspective; qualitative research; stakeholder engagement.

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Conflict of interest statement

Competing interests: None declared.

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Research priority setting in childhood chronic disease: a systematic review

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Research priority setting in childhood chronic disease: a systematic review

Authors

Affiliations

Abstract

Conflict of interest statement

Publication types

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LinkOut - more resources

Full Text Sources

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Medical