Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership
Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership
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DOI：
10.1136/bmjopen-2014-006233
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发表时间：
2015-01-01
期刊：
影响因子：
2.9
通讯作者：
Cowan, Katherine
中科院分区：
文献类型：
--
作者：
Morris, Christopher;Simkiss, Doug;Cowan, Katherine
目的：让年轻人、家长照顾者和临床医生参与一个系统性的过程，以确定并优先考虑关于改善神经残疾儿童和年轻人健康和福祉的方法的研究问题。
设计：英国儿童残疾学会（BACD） - 詹姆斯·林德联盟研究重点设定伙伴关系，将患者、照顾者和临床医生作为平等的利益相关者聚集在一起。
环境：英国卫生服务机构和社区。
方法：BACD战略研究小组组建了该伙伴关系。成立了一个指导小组；招募了慈善机构和专业伙伴组织。通过公开调查以及法定指南的研究建议收集意见。对项目进行汇总以形成指示性研究问题，并根据研究证据确认为不确定性问题。通过一次中期调查对问题进行排序以筛选出主题。一个由不同利益相关者组成的小组在最终的重点设定研讨会上讨论了前25个问题，确定了最终的排名顺序以及前10个研究重点。
参与者：伙伴组织包括13个慈善机构和8个专业协会。369人提交了建议（40%为非临床医生）。76人参与了中期的优先排序（26名家长、1名年轻人、10名慈善机构代表、39名临床医生）；22人参加了最终研讨会（3名年轻人、7名家长、3名慈善机构代表、9名专业人员）。
结果：前三个研究重点涉及（1）确定主流疗法的最佳频率和强度（剂量），（2）选择和鼓励使用沟通策略的方法，以及（3）改善儿童对残疾态度的方法。前10个重点包括评估促进活动能力、自我效能、心理健康、控尿能力、身体素质、教育融入以及减少睡眠干扰影响的干预措施。
结论：该方法提供了一个系统且透明的过程来确定研究重点，其中包括了通常未对设定研究议程做出贡献的利益相关者。确定的前10个重点和其他主题为研究人员和资助研究的机构提供了资源。
Objectives: To engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability.Design: British Academy of Childhood Disability (BACD)-James Lind Alliance research priority setting partnership bringing together patients, carers and clinicians as equal stakeholders.Setting: UK health service and community.Methods: The BACD Strategic Research Group formed the partnership. A Steering Group was established; charity and professional partner organisations were recruited. Suggestions were gathered in an open survey and from research recommendations for statutory guidance. Items were aggregated to formulate indicative research questions and verified as uncertainties from research evidence. An interim survey was used to rank the questions to shortlist topics. A mixed group of stakeholders discussed the top 25 questions at the final priority setting workshop agreeing a final rank order and the top 10 research priorities.Participants: Partner organisations were 13 charities and 8 professional societies. 369 people submitted suggestions (40% non-clinicians). 76 people participated in the interim prioritisation (26 parents, 1 young person, 10 charity representatives, 39 clinicians); 22 took part in the final workshop (3 young people, 7 parents, 3 charity representatives, 9 professionals).Results: The top three research priorities related to (1) establishing the optimal frequency and intensity (dose) for mainstream therapies, (2) means for selecting and encouraging use of communication strategies and (3) ways to improve children's attitudes towards disability. The top 10 included evaluating interventions to promote mobility, self-efficacy, mental health, continence, physical fitness, educational inclusion and reduce impacts of sleep disturbance.Conclusions: The methodology provided a systematic and transparent process to identify research priorities that included stakeholders that have typically not contributed to setting the research agenda. The top 10 and other topics identified provide a resource for researchers and agencies that fund research