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The CDH Patient Journey

We are very proud and excited to have had The CDH Patient Perspective Journey published in Frontiers in Pediatrics (neonatology section) in February 2023.

We started to work on producing the patient journey in 2016 following a need to create one for the basis of the development of a CDH Mobile App we had started in 2014.

The starting point for The CDH Patient Journey was to organise a group of individuals affected by CDH to take part in a day of discussion with the aim of mapping out what a CDH journey looks like.

We then undertook lots of research where we looked at the information and knowledge that we had gained over the years. This was done through different means, such as the results of surveys that our families participated in, the types of support requests we received, what families told us concerned them, or the daily challenges they faced (also called feedback). All of this information helped to create a map of timepoints in life, what happened, when, where and how things could help to improve experiences and outcomes. This with the ultimate goal of improving quality of Life

Eventually, after closely looking at this information and presenting it at various medical conferences and gaining feedback from medical professionals, we were able to create a visual CDH Patient Journey to use as an infographic in 2022. The draft infographic was presented publicly for the first time at the 6th ERNICA meeting in Helsinki Finland. The Final research manuscript was written and the abstract was first presented at The CDH 2022 International Symposium/workshop in Glasgow in April 2022 that is hosted every two years by The CDH Study Group based in the United States and The CDH Euro-consortium based in Europe. We were then encouraged to submit our research for publication. Once we had submitted this work to the publisher, we had to wait a period of time to find out if it had been accepted. The manuscript, which is the written explanation of the research work carried out that includes how it was done, who by, the evidence used and the results, had to undergo a review by other experts and they make comments and give feedback. One of the things suggested was that we change the title from The CDH Patient Journey to the CDH Patient Perspective Journey, which we agreed to do, as it tells the reader that this is written from the view of the patient, which makes the research and results even more important in our opinion.

As you can imagine, after the years of hard work and with your support, The CDH Patient Journey being published means a huge step for everyone affected by CDH and for future patients and their families. The work doesn’t stop here though and now we must use this journey to it’s full potential! If you would like to know more please Contact us here or if you would like to download a printable PDF click here