Research priority setting in childhood chronic disease: A systematic review

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

Research output: Contribution to journalArticle

3 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 - 1 Oct 2018

Fingerprint

Chronic Disease
Caregivers
Pediatrics
Research
Delphi Technique
Knowledge Management
Family Health
Neurology
Self Care
Focus Groups
Checklist
MEDLINE
Parents
Quality of Life
Interviews
Delivery of Health Care
Education
Health
Neoplasms
Therapeutics

Cite this

Odgers, H. L., Tong, A., Lopez-Vargas, P., Davidson, A., Jaffe, A., McKenzie, A., ... 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
Odgers, Harrison Lindsay ; Tong, Allison ; Lopez-Vargas, Pamela ; Davidson, Andrew ; Jaffe, Adam ; McKenzie, Anne ; Pinkerton, Ross ; Wake, Melissa ; Richmond, Peter ; Crowe, Sally ; Caldwell, Patrina Ha Yuen ; Hill, Sophie ; Couper, Jennifer ; Haddad, Suzy ; Kassai, Behrouz ; Craig, Jonathan C. / Research priority setting in childhood chronic disease : A systematic review. In: Archives of Disease in Childhood. 2018 ; Vol. 103, No. 10. pp. 942-951.
@article{f471cead1e2647bd9a538faa1dc67126,
title = "Research priority setting in childhood chronic disease: A systematic review",
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",
author = "Odgers, {Harrison Lindsay} and Allison Tong and Pamela Lopez-Vargas and Andrew Davidson and Adam Jaffe and Anne McKenzie and Ross Pinkerton and Melissa Wake and Peter Richmond and Sally Crowe and Caldwell, {Patrina Ha Yuen} and Sophie Hill and Jennifer Couper and Suzy Haddad and Behrouz Kassai and Craig, {Jonathan C.}",
year = "2018",
month = "10",
day = "1",
doi = "10.1136/archdischild-2017-314631",
language = "English",
volume = "103",
pages = "942--951",
journal = "Archive Diseases of Childhood",
issn = "0003-9888",
publisher = "BMJ Publishing Group",
number = "10",

}

Odgers, HL, Tong, A, Lopez-Vargas, P, Davidson, A, Jaffe, A, McKenzie, A, Pinkerton, R, Wake, M, Richmond, P, Crowe, S, Caldwell, PHY, Hill, S, Couper, J, Haddad, S, Kassai, B & Craig, JC 2018, 'Research priority setting in childhood chronic disease: A systematic review' Archives of Disease in Childhood, vol. 103, no. 10, pp. 942-951. https://doi.org/10.1136/archdischild-2017-314631

Research priority setting in childhood chronic disease : A systematic review. / Odgers, Harrison Lindsay; Tong, Allison; Lopez-Vargas, Pamela; Davidson, Andrew; Jaffe, Adam; McKenzie, Anne; Pinkerton, Ross; Wake, Melissa; Richmond, Peter; Crowe, Sally; Caldwell, Patrina Ha Yuen; Hill, Sophie; Couper, Jennifer; Haddad, Suzy; Kassai, Behrouz; Craig, Jonathan C.

In: Archives of Disease in Childhood, Vol. 103, No. 10, 01.10.2018, p. 942-951.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Research priority setting in childhood chronic disease

T2 - A systematic review

AU - Odgers, Harrison Lindsay

AU - Tong, Allison

AU - Lopez-Vargas, Pamela

AU - Davidson, Andrew

AU - Jaffe, Adam

AU - McKenzie, Anne

AU - Pinkerton, Ross

AU - Wake, Melissa

AU - Richmond, Peter

AU - Crowe, Sally

AU - Caldwell, Patrina Ha Yuen

AU - Hill, Sophie

AU - Couper, Jennifer

AU - Haddad, Suzy

AU - Kassai, Behrouz

AU - Craig, Jonathan C.

PY - 2018/10/1

Y1 - 2018/10/1

N2 - 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.

AB - 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.

KW - chronic disease

KW - outcomes research

KW - patient perspective

KW - qualitative research

KW - stakeholder engagement

UR - http://www.scopus.com/inward/record.url?scp=85049218107&partnerID=8YFLogxK

U2 - 10.1136/archdischild-2017-314631

DO - 10.1136/archdischild-2017-314631

M3 - Article

VL - 103

SP - 942

EP - 951

JO - Archive Diseases of Childhood

JF - Archive Diseases of Childhood

SN - 0003-9888

IS - 10

ER -