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UK research priority setting for childhood neurological conditions
Jill Cadwgan1, Jane Goodwin2, Barbara Babcock3
1Children's Neurosciences, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK.
Insights
Research priorities for childhood neurological conditions (CNCs) were identified. The top 10 questions focus on effective interventions for common and rare conditions affecting children and young people.
Area of Science:
- Pediatric Neurology
- Clinical Research
- Patient-Centered Outcomes
Background:
- Childhood neurological conditions (CNCs) encompass a wide range of common and rare disorders affecting children and young people.
- Identifying research priorities is crucial for advancing effective interventions and improving patient outcomes.
- Patient and caregiver involvement is essential in setting research agendas.
Purpose of the Study:
- To establish research priorities for the effectiveness of interventions in children and young people (CYP) with childhood neurological conditions (CNCs).
- To address key uncertainties identified by patients, caregivers, and clinicians.
- To guide future research funding and clinical trial design.
Main Methods:
- Utilized the James Lind Alliance (JLA) Priority Setting Partnership (PSP) methodology, a collaboration between the National Institute for Health and Care Research (NIHR) and the British Paediatric Neurology Association.
- Conducted two surveys to gather and prioritize uncertainties from a broad stakeholder group, including CYP, parents, and caregivers.
- A consensus workshop involving diverse stakeholders finalized the top 10 research priorities.
Main Results:
- Over 1800 uncertainties were submitted by 701 participants in the initial survey.
- 1451 participants prioritized 44 uncertainties in the second survey.
- The final top 10 research priorities focus on interventions for CNCs and associated comorbidities like sleep, emotional well-being, and distressing symptoms.
Conclusions:
- The identified research priorities will direct future studies on intervention effectiveness for children and young people with neurological conditions.
- This patient-centered approach ensures research addresses the most pressing needs of those affected by CNCs.
- The findings will inform the development of more targeted and effective treatments.
Aim:
To identify research priorities regarding the effectiveness of interventions for children and young people (CYP) with childhood neurological conditions (CNCs). These include common conditions such as epilepsies and cerebral palsy, as well as many rare conditions.
Method:
The National Institute for Health and Care Research (NIHR) and the James Lind Alliance (JLA) champion and facilitate priority setting partnerships (PSPs) between patients, caregivers, and clinicians (stakeholders) to identify the most important unanswered questions for research (uncertainties). A NIHR-JLA and British Paediatric Neurology Association collaboration used the JLA PSP methodology. This consisted of two surveys to stakeholders: survey 1 (to identify uncertainties) and survey 2 (a prioritization survey). The final top 10 priorities were agreed by consensus in a stakeholder workshop.
Results:
One hundred and thirty-two charities and partner organizations were invited to participate. In survey 1, 701 participants (70% non-clinicians, including CYP and parent and caregivers) submitted 1800 uncertainties from which 44 uncertainties were identified for prioritization in survey 2; from these, 1451 participants (83% non-clinicians) selected their top 10 priorities. An unweighted amalgamated score across participant roles was used to select 26. In the final workshop, 14 health care professionals, 11 parent and caregivers, and two CYP ranked the 26 questions to finalize the top 10 priorities. Ten top priority questions were identified regarding interventions to treat CYP with CNCs and their associated comorbidities, for example, sleep, emotional well-being, and distressing symptoms.
Interpretation:
The results of this study will inform research into the effectiveness of interventions for children with neurological conditions.
