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Research priority setting in childhood chronic disease: a systematic review
Harrison Lindsay Odgers1,2, Allison Tong1,2, Pamela Lopez-Vargas2,3
1Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.
Archives of Disease in Childhood
|April 13, 2018
Summary
Research priority setting in childhood chronic diseases often excludes children and families. Improving methods and involving patients can create a more relevant research agenda for pediatric chronic conditions.
Area of Science:
- Pediatric chronic disease research
- Health services research
- Priority setting methodologies
Background:
- Childhood chronic diseases represent a significant global health burden.
- Effective research priority setting is crucial for advancing pediatric care.
- Current approaches may not adequately reflect the needs of all stakeholders, particularly children and families.
Purpose of the Study:
- To systematically review research priority setting approaches in childhood chronic diseases.
- To identify and describe the research priorities of diverse stakeholders, including patients, caregivers, and health professionals.
- To evaluate the methods used in priority setting for pediatric chronic disease research.
Main Methods:
- A systematic literature review was conducted across multiple databases (MEDLINE, Embase, PsycINFO, CINAHL).
- Studies eliciting stakeholder priorities for pediatric chronic disease research were included.
- Data extraction focused on prioritization processes and generated research topics.
Main Results:
- Eighty-three studies involving over 15,000 participants were analyzed.
- Cancer, neurology, and endocrine/metabolism were the most frequent health areas.
- Key priority topics included treatment, disease trajectory, and quality of life, though child/caregiver involvement was infrequent (24% parents, 5% children).
Conclusions:
- Existing research priority setting in pediatric chronic diseases is broad but often lacks clarity and sufficient patient/family engagement.
- The methods employed in many studies were not well-described.
- Implementing systematic, explicit processes with patient and family partnership is essential for developing a more relevant research agenda.
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