Children's Neurosciences, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK.
Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK.
Dev Med Child Neurol. 2024 Dec;66(12):1590-1599. doi: 10.1111/dmcn.16021. Epub 2024 Jul 16.
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.
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.
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.
The results of this study will inform research into the effectiveness of interventions for children with neurological conditions.
确定针对儿童和青少年（CYP）患有儿童神经疾病（CNC）的干预措施的有效性的研究重点。这些疾病包括癫痫和脑瘫等常见疾病，以及许多罕见疾病。
国家卫生与保健卓越研究所（NIHR）和詹姆斯林德联盟（JLA）支持并促进患者、护理人员和临床医生（利益相关者）之间的优先事项设定伙伴关系（PSP），以确定研究（不确定性）最重要的未回答问题。NIHR-JLA 和英国儿科神经病学协会合作使用 JLA PSP 方法。这包括对利益相关者进行的两项调查：调查 1（确定不确定性）和调查 2（优先排序调查）。最终的前 10 项重点是在利益相关者研讨会上通过共识达成的。
邀请了 132 家慈善机构和合作伙伴组织参与。在调查 1 中，701 名参与者（70%是非临床医生，包括 CYP 和父母和照顾者）提交了 1800 个不确定性，从中确定了 44 个不确定性用于调查 2 的优先级；其中，1451 名参与者（83%是非临床医生）选择了他们的前 10 个重点。使用跨参与者角色的未加权综合得分来选择 26 个。在最后一次研讨会上，14 名医疗保健专业人员、11 名父母和照顾者以及两名 CYP 将这 26 个问题进行排名，以确定前 10 个重点。确定了 10 个针对治疗 CNC 和相关共病（例如睡眠、情绪健康和令人痛苦的症状）的 CYP 的干预措施的重点问题。
这项研究的结果将为针对神经疾病儿童的干预措施的有效性研究提供信息。
