UK research priority setting for childhood neurological conditions

Author:

Cadwgan Jill1ORCID,Goodwin Jane2ORCID,Babcock Barbara3,Brick Molly4,Chin Richard56ORCID,Easton Ava7ORCID,Green Ben4,Hannan Siobhan4,Inward Rhys P. D.8ORCID,Kinsella Suzannah9,King Callum4,Kurian Manju A.1011ORCID,Levine Philip4,Mallick Andrew12ORCID,Parr Jeremy2ORCID,Partridge Carol Anne13ORCID,Amin Sam14ORCID,Lumsden Dan115ORCID,Cross J. Helen1617ORCID,Lim Ming J.118ORCID,

Affiliation:

1. Children's Neurosciences Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust London UK

2. Population Health Sciences Institute Newcastle University Newcastle upon Tyne UK

3. Transverse Myelitis Society Brentford UK

4. British Paediatric Neurology Association London UK

5. Centre for Clinical Brain Sciences University of Edinburgh Edinburgh UK

6. Royal Hospital for Children and Young People Edinburgh UK

7. Department of Clinical Infection, Microbiology & Immunology University of Liverpool Liverpool UK

8. Department of Biology University of Oxford Oxford UK

9. The James Lind Alliance, National Institute for Health and Care Research, School of Healthcare Enterprise and Innovation University of Southampton Southampton UK

10. Developmental Neurosciences Zayed Centre for Research into Rare Disease in Children, GOS‐Institute of Child Health, University College London London UK

11. Department of Neurology Great Ormond Street Hospital London UK

12. Department of Paediatric Neurology Bristol Royal Hospital for Children Bristol UK

13. CDKL5 UK UK

14. University Hospitals Bristol and Weston NHS Foundation Trust Bristol UK

15. Early Life Imaging, School of Biomedical Engineering and Imaging Sciences, Faculty of Life Sciences and Medicine King's College London London UK

16. Developmental Neurosciences Research and Teaching Department University College London NIHR BRC Great Ormond Street Institute of Child Health London UK

17. Paediatric Neurosciences Great Ormond Street Hospital for Children London UK

18. Women and Children's Health, School of Life Course & Population Sciences, Faculty of Life Sciences and Medicine King's College London London UK

Abstract

AbstractAimTo 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.MethodThe 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.ResultsOne 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.InterpretationThe results of this study will inform research into the effectiveness of interventions for children with neurological conditions.

Publisher

Wiley

Reference54 articles.

1. Epilepsy Statistics | Epilepsy Institute (epilepsy‐institute.org.uk) (last accessed 23 Jan 2024)

2.

Identifying cerebral palsy from routinely-collected data in England and Wales

3. http://www.musculardystrophyuk.org/about‐muscle‐wasting‐conditions/Accessed 10 October 2017

4. Population Estimates for UK England and Wales Office for National Statistics http://www.ons.gov.uk accessed 04 January 2024.

5. Correlation Between National Institutes of Health Funding for Pediatric Research and Pediatric Disease Burden in the US

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