Jill Cadwgan, Jane Goodwin, Barbara Babcock, Molly Brick, Richard Chin, Ava Easton, Ben Green, Siobhan Hannan, Rhys P D Inward, Suzannah Kinsella, Callum King, Manju A Kurian, Phillip Levine, Andrew Mallick, Jeremy Parr, Carol Anne Partridge, Sam Amin, Dan Lumsden, J Helen Cross, Ming J Lim
{"title":"英国儿童神经系统疾病研究重点的确定。","authors":"Jill Cadwgan, Jane Goodwin, Barbara Babcock, Molly Brick, Richard Chin, Ava Easton, Ben Green, Siobhan Hannan, Rhys P D Inward, Suzannah Kinsella, Callum King, Manju A Kurian, Phillip Levine, Andrew Mallick, Jeremy Parr, Carol Anne Partridge, Sam Amin, Dan Lumsden, J Helen Cross, Ming J Lim","doi":"10.1111/dmcn.16021","DOIUrl":null,"url":null,"abstract":"<p><strong>Aim: </strong>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.</p><p><strong>Method: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Interpretation: </strong>The results of this study will inform research into the effectiveness of interventions for children with neurological conditions.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":null,"pages":null},"PeriodicalIF":3.8000,"publicationDate":"2024-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"UK research priority setting for childhood neurological conditions.\",\"authors\":\"Jill Cadwgan, Jane Goodwin, Barbara Babcock, Molly Brick, Richard Chin, Ava Easton, Ben Green, Siobhan Hannan, Rhys P D Inward, Suzannah Kinsella, Callum King, Manju A Kurian, Phillip Levine, Andrew Mallick, Jeremy Parr, Carol Anne Partridge, Sam Amin, Dan Lumsden, J Helen Cross, Ming J Lim\",\"doi\":\"10.1111/dmcn.16021\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Aim: </strong>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.</p><p><strong>Method: </strong>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.</p><p><strong>Results: </strong>One hundred and thirty-two charities and partner organizations were invited to participate. 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UK research priority setting for childhood neurological conditions.
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.
期刊介绍:
Wiley-Blackwell is pleased to publish Developmental Medicine & Child Neurology (DMCN), a Mac Keith Press publication and official journal of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the British Paediatric Neurology Association (BPNA).
For over 50 years, DMCN has defined the field of paediatric neurology and neurodisability and is one of the world’s leading journals in the whole field of paediatrics. DMCN disseminates a range of information worldwide to improve the lives of disabled children and their families. The high quality of published articles is maintained by expert review, including independent statistical assessment, before acceptance.