Abstract
ObjectivesThe 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.DesignResearch PSP in accordance with the JLA standardised methodology.SettingAustralian community and institutions caring for patients with CDH and their families.PatientsCDH 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.Main outcome measureTop 10 research priorities for CDH.Results377 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.ConclusionStakeholders’ 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.
Funder
RCH Foundation Clinical Scientist Fellowship
National Health and Medical Research Council