Top 10 research priorities for congenital diaphragmatic hernia in Australia: James Lind Alliance Priority Setting
Roberto Chiletti1,2, Courtney Vodopic3, Emiko Hunt3
1The Royal Children's Hospital, Melbourne, Victoria, Australia.
Insights
The Congenital Diaphragmatic Hernia (CDH) Journey Priority Setting Partnership identified the top 10 research priorities for CDH patients and families. These priorities cover the entire CDH journey, from antenatal care to long-term outcomes.
Area of Science:
- Pediatric Surgery
- Neonatal Care
- Public Health
Background:
- Congenital Diaphragmatic Hernia (CDH) is a complex birth defect requiring specialized care.
- There is a need to align research efforts with the priorities of those affected by CDH.
Purpose of the Study:
- To identify and prioritize key research questions for Congenital Diaphragmatic Hernia (CDH) in Australasia.
- To involve patients, families, and healthcare professionals in setting research agendas.
Main Methods:
- Utilized the James Lind Alliance (JLA) standardized methodology for Priority Setting Partnerships (PSP).
- Collected and categorized 377 questions from a community survey into 50 research questions.
- Conducted a prioritization workshop with 21 participants (survivors, families, healthcare professionals) to rank the top 10 research priorities.
Main Results:
- The initial survey generated 377 questions, refined to 50.
- A prioritization workshop identified the top 10 research priorities for Congenital Diaphragmatic Hernia (CDH).
- These priorities encompass the spectrum of care, from prenatal diagnosis to long-term quality of life.
Conclusions:
- Stakeholder engagement successfully identified crucial research priorities for Congenital Diaphragmatic Hernia (CDH).
- Prioritizing these identified research questions will enhance outcomes for individuals with CDH and their families.
- Future research should focus on these stakeholder-defined priorities to maximize meaningful impact.
Objectives:
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.
Design:
Research PSP in accordance with the JLA standardised methodology.
Setting:
Australian community and institutions caring for patients with CDH and their families.
Patients:
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.
Main Outcome Measure:
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.
Conclusion:
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.
