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Lookup NU author(s): Dr Jill Cadwgan, Dr Jane Goodwin, Professor Jeremy Parr, Professor Bobby McFarlandORCiD, Dr Catherine Tuffrey
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2024 The Author(s). Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press. 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.
Author(s): Cadwgan J, Goodwin J, Babcock B, Brick M, Chin R, Easton A, Green B, Hannan S, Inward RPD, Kinsella S, King C, Kurian MA, Levine P, Mallick A, Parr J, Partridge CA, Amin S, Lumsden D, Cross JH, Lim MJ, Childs A-M, Ganesan V, Hart A, Kneen R, McFarland R, Wassmer E, Whitehouse WP, Williams R, Arichi T, Burford V, Crombie S, Damodaran L, Eunson P, Gringras P, Gordon A, Harrop E, Hart A, Martin C, Rush C, Tuffrey C
Publication type: Article
Publication status: Published
Journal: Developmental Medicine and Child Neurology
Year: 2024
Volume: 66
Issue: 12
Pages: 1590-1599
Print publication date: 01/12/2024
Online publication date: 16/07/2024
Acceptance date: 12/06/2024
Date deposited: 29/07/2024
ISSN (print): 0012-1622
ISSN (electronic): 1469-8749
Publisher: John Wiley and Sons Inc.
URL: https://doi.org/10.1111/dmcn.16021
DOI: 10.1111/dmcn.16021
Data Access Statement: There are no individual participant data that underlie the results reported in this study. Any primary data from the uncertainties after deidentification from respondents from all stages of the PSP process can be shared up to 5 years after the publication of the article with researchers who provide a methodologically sound proposal for any purpose. Proposals should be directed to philip.levine@bpna.org.uk; to gain access, researchers requesting data will need to sign a data access agreement.
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