目的:与CDH澳大利亚合作开发了先天性膈疝(CDH)旅程优先设定伙伴关系(PSP)的差距,詹姆斯·林德联盟(JLA)和默多克儿童研究所确定CDH患者的研究重点,他们的家人和医护人员在澳大利亚。
方法:按照JLA标准化方法研究PSP。
方法:澳大利亚社区和机构照顾CDH患者及其家人。
方法:CDH幸存者,患有CDH的儿童(包括丧亲儿童)的家庭以及包括重症监护医师和护士(新生儿和儿科)在内的医疗保健专业人员,产科,外科,专职医疗专业人员(物理治疗师,言语病理学家和言语治疗师)和全科医生。
方法:CDH的十大研究重点。
结果:377个问题,根据一项基于社区的在线调查,被分类并整理成50个研究问题。通过进一步的优先过程,然后在优先排序研讨会上讨论了21个问题,由21名参与者(CDH幸存者,出生与CDH(失去亲人和没有)的孩子的父母和11多学科医疗保健专业人员)进入他们的十大研究重点。
结论:利益相关者的参与确定了与CDH相关的前10个研究问题,从产前护理到长期功能结果,这应该优先考虑未来的研究,以最大限度地提高CDH患者及其家人的有意义的结果。
OBJECTIVE: The Gaps in the Congenital Diaphragmatic Hernia (CDH) Journey Priority Setting Partnership (PSP) was developed in collaboration with CDH Australia, James Lind Alliance (JLA) and the Murdoch Children\'s Research Institute to identify research priorities for people with CDH, their families and healthcare workers in Australasia.
METHODS: Research PSP in accordance with the JLA standardised methodology.
METHODS: Australian community and institutions caring for patients with CDH and their families.
METHODS: CDH survivors, families of children born with CDH (including bereaved) and healthcare professionals including critical care physicians and nurses (neonatal and paediatric), obstetric, surgical, allied health professionals (physiotherapists, speech pathologists and speech therapists) and general practitioners.
METHODS: Top 10 research priorities for CDH.
RESULTS: 377 questions, from a community-based online survey, were categorised and collated into 50 research questions. Through a further prioritisation process, 21 questions were then discussed at a prioritisation workshop where they were ranked by 21 participants (CDH survivors, parents of children born with CDH (bereaved and not) and 11 multidisciplinary healthcare professionals) into their top 10 research priorities.
CONCLUSIONS: Stakeholders\' involvement identified the top 10 CDH-related research questions, spanning from antenatal care to long-term functional outcomes, that should be prioritised for future research to maximise meaningful outcomes for people with CDH and their families.