ArticleFrontiers in pediatrics2023
The CDH patient perspective journey.
Article in Frontiers in pediatrics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed.
- "One has to beg and fight for everything" - a qualitative study on patient journeys of children with chronic conditions in Germany.BMC health services research · 2026Article
- Fostering continuous quality improvement in a European rare disease network.Frontiers in health services · 2025Article
- Mapping the Patient Experience in a Pediatric Hemophilia Unit: Our Patient Journey.Journal of clinical medicine · 2024Article
- Major surgical conditions of childhood and their lifelong implications: comprehensive review.BJS open · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Congenital Diaphragmatic Hernia is a malformation of the diaphragm resulting in ongoing clinical symptoms and problems. Mortality remains high, particularly where there are other issues involved. Tracking a patient throughout their lifetime to understand the full impact on health and function is challenging. CDH UK is a registered charity supporting anyone affected by CDH. It has over 25 years of experience and a broad range of patient experience and knowledge. Aims: To develop a patient journey with timepoints of significance. Methods: We studied our own data and looked at what we already knew from publications and medical advisors. We recruited a focus group, plotted out stages and timepoints through their "lived" experiences using the Team Idea Mapping method. We then compared these experiences to our own data, to identify the common issues in daily life and care. Outcome: We have developed a patient journey through the eyes of the patient and turned it into a patient friendly infographic. This can be used as a tool to help understand the CDH Journey throughout a patient's lifetime. CDH UK has already used this to create a first prototype of a mobile application. It has also further helped to recognize areas of patient concern and to improve services and resources. Discussion: This can be used as a basis for care and research, including standards, benchmarking, transition and helping improvements in healthcare, education, family life and social settings. Potentially holding clues as to the etiology and pathology of the condition and an opportunity to further explore theories and unanswered questions. It may help improve counselling and bereavement care, resulting in better general and mental health outcomes.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.