The “Gaps in the CDH Journey” project seeks to improve outcomes for children born with Congenital Diaphragmatic Hernia (CDH) through identifying the ‘Top 10’ research priorities of people with a lived experience of CDH.

Gaps in the CDH Journey: Priority-Setting Partnership between CDH Australia, Murdoch Children’s Research Institute and James Lind Alliance

 

CDH Australia partnered with Murdoch Children’s Research Institute and James Lind Alliance to fund and deliver a research paper outlining the unanswered questions relating to CDH care in Australia.

 

Involving members of the CDHA community, as well as medical and allied health experts involved in the care of CDH families, the project’s research was published in the Archives of Disease in Childhood (ADC) in 2024.

 

This is an international and peer-reviewed journal specialising in child health. As an official journal of the Royal College of Paediatrics and Child Health, ADC provides paediatricians with the most recent, relevant and original research reports, commentaries, clinical and policy reviews, and education.

 

Publication of the research study increases viewership of the study and its results. This publication will reach, and be read, by clinicians, researchers and academics, thereby increasing knowledge of Congenital Diaphragmatic Hernia, and increasing the likelihood of further research into the Top 10 CDH Research Priorities.

About

 

The Gaps in the Congenital Diaphragmatic Hernia (CDH) Journey Priority Setting Partnership (PSP) was developed as a collaboration between CDH Australia (CDHA) and the Murdoch Children’s Research Institute (MCRI). Guided by the James Lind Alliance (JLA) the project aimed to identify questions and priorities of people with a lived experience of Congenital Diaphragmatic Hernia (CDH), their caregivers, and healthcare providers.

 

Who Was Involved?

 

Lead Researcher and Principal Investigator: Dr Trisha Prentice

Project Coordinator: Jean Hellstern

JLA Advisor: Tamara Rader

Steering Group Clinical Representatives: Dr Trisha Prentice, Dr Monique Bertinetti, Dr Roberto Chiletti, Nadine Griffiths, Dr Leah Hickey, Valerie Kyritsis, Dr Stephanie Malarbi, Dr Scott Petersen, Professor David Tingay

Steering Group Patient and Carer Representatives: Courtney Vodopic, Susan Fisher, Val Manuelpillai, Emiko Hunt, Caitlin Thouliss, Jessica Lawer

 

Project Scope

 

From July 2022 the steering group met regularly, and were responsible for all aspects of the PSP design and scope. This included:

  • Management of pregnancies where CDH has been antenatally detected.
  • Counselling and communication to families about management of CDH.
  • Postnatal management, including resuscitation, stabilisation, surgical intervention and postoperative management.
  • Longer-term follow-up and management of patients with CDH; care of expectant parents previously diagnosed with CDH.
  • Improving the well-being of patients and families who have been directly impacted by a diagnosis or care of a child with CDH.

The PSP limited the scope to services relevant to Australian practice.

 

Methodology

 

Standardised JLA methodology was used.

 

The steering group was established in July 2022, consisting of CDHA personnel, community members with lived experience of CDH, and multidisciplinary health professionals with expertise in the care and management of children affected by CDH.

 

The initial survey was distributed from 13 November 2022, resulting in 377 questions about “gaps in the CDH journey” from 175 respondents. The steering group removed 54 questions which were not deemed to be within scope, or answerable by research, and a further four questions with relevant research already evident.

 

Further prioritisation resulted in the Top 50 research questions. These were put out in a second survey (19 June 2023), which had 108 respondents and led to the formulation of the Top 21 research questions.

 

The final stage in the process was a workshop. This was divided into two sessions on consecutive days (2 and 3 August 2023). Ten CDHA community members and 11 healthcare professionals discussed the 21 research questions, and collaboratively proposed the re-prioritisation of the research questions, resulting in the Top 10.

Conclusion

Congenital diaphragmatic hernia (CDH) is a life-threatening condition requiring multicentre research collaboration to advance outcomes throughout the CDH journey. This project described the top 10 CDH-related research questions as defined through an Australian Research Priority Setting Partnership involving healthcare professionals and the CDH community.

 

Research collaborations targeting the defined research priorities for CDH are likely to have the greatest impact for children born with CDH throughout their lifetime and their families.

 

Access the Top 10 Research Priorities for CDH here

CDH research articles

 

Read the latest here

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