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Research priorities for children with neurological impairment and medical complexity in high-income countries
Catherine Diskin1, Kristina Malik2,3, Peter J Gill1,4,5,6
1Division of Paediatric Medicine, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
Insights
This study identified key research priorities for children with neurological impairment and medical complexity. Findings guide future research by highlighting critical areas like pain, mental health, and feeding intolerance.
Area of Science:
- Pediatric Neurology
- Clinical Research Prioritization
- Child Health
Background:
- Children with neurological impairment and medical complexity represent a vulnerable subgroup requiring targeted research.
- Existing research may not fully address the complex clinical needs of these children.
Purpose of the Study:
- To establish high-priority clinical research areas for children with neurological impairment and medical complexity.
- To gather consensus from clinicians and caregivers on essential research topics.
Main Methods:
- A modified three-stage Delphi study was conducted with an international expert panel.
- Online surveys were utilized, guided by a steering committee, involving clinicians and family caregivers.
- Expert input was refined through multiple survey rounds to develop a prioritized research list.
Main Results:
- A diverse panel of 49 clinicians and 12 family caregivers contributed.
- 601 responses were distilled into 26 clinical topics and 126 research questions.
- Top research priorities included irritability/pain, child mental health, tone disorders, polypharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance.
Conclusions:
- The study successfully established a prioritized research agenda for children with neurological impairment and medical complexity.
- Findings provide a roadmap for future clinical research, informed by expert consensus.
- Addressing identified clinical questions is crucial for improving care for this population.
Aim:
To identify the highest-priority clinical research areas related to children with neurological impairment and medical complexity among clinicians and caregivers.
Method:
A modified, three-stage Delphi study using online surveys and guided by a steering committee was completed. In round 1, clinicians and family caregivers suggested clinical topics and related questions that require research to support this subgroup of children. After refinement of the suggestions by the steering committee, participants contributed to 1 (family caregivers) or 2 (clinicians) subsequent rounds to develop a prioritized list.
Results:
A diverse international expert panel consisting of 49 clinicians and 12 family caregivers provided 601 responses. Responses were distilled into 26 clinical topics comprising 126 related questions. The top clinical topics prioritized for research were irritability and pain, child mental health, disorders of tone, polypharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance. The clinician expert panel also prioritized 10 specific research questions.
Interpretation:
Study findings support a research agenda for children with neurological impairment and medical complexity focused on addressing clinical questions, prioritized by an international group of clinicians and caregivers.
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