Evidence map›Paper›PMID 39521743›Full record

ArticlePediatric surgery international2024

Follow-up and transition practices in esophageal atresia: a review of European Reference Network on rare Inherited and Congenital Anomalies (ERNICA) centres and affiliates.

Natalie Durkin, Marco Pellegrini, Ramon Gorter, Graham Slater, Kate M K Cross, Benno Ure, Rene Wijnen, Frédéric Gottrand, Simon Eaton, Paolo De Coppi and 1 more

Abstract read
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In one paragraph

Article in Pediatric surgery international, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
  4. Review
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Natalie DurkinStem Cell and Regenerative Medicine Section, Developmental Biology and Cancer Research, Zayed Centre for Research into Rare Disease in Children, Great Ormond Street Institute of Child Health, University College London, London, UK.
Marco PellegriniStem Cell and Regenerative Medicine Section, Developmental Biology and Cancer Research, Zayed Centre for Research into Rare Disease in Children, Great Ormond Street Institute of Child Health, University College London, London, UK.
Ramon GorterDepartment of Pediatric Surgery, Emma Children's Hospital Amsterdam UMC, University of Amsterdam, Meibergdreef 9, Amsterdam, The Netherlands.
Graham SlaterEAT-Esophegeal Atresia Global Support Groups e.V., Stuttgart, Germany.
Kate M K CrossNeonatal and Paediatric Surgery, Great Ormond Street Hospital for Children, London, UK.
Benno UreDepartment of Pediatric Surgery, Hannover Medical School, Hannover, Germany.
Rene WijnenDepartment of Pediatric Surgery and Intensive Care, Erasmus MC Sophia Children's Hospital, Rotterdam, Netherlands.
Frédéric GottrandINFINITE U1286, University of Lille, CRACMO Reference Centre for Rare Oesophageal Diseases, CHU Lille, Lille, France.
Simon EatonStem Cell and Regenerative Medicine Section, Developmental Biology and Cancer Research, Zayed Centre for Research into Rare Disease in Children, Great Ormond Street Institute of Child Health, University College London, London, UK. s.eaton@ucl.ac.uk.
Paolo De CoppiStem Cell and Regenerative Medicine Section, Developmental Biology and Cancer Research, Zayed Centre for Research into Rare Disease in Children, Great Ormond Street Institute of Child Health, University College London, London, UK.
ERNICA

Funding

European Union ERNICAGOSH Childrens Charity Lewis Spitz Surgeon Scientist PhD Studentship
6 · The paper itself

Abstract

purposeThe purpose of this study was to understand the provision and distribution of esophageal atresia (EA) follow-up (FU) and transition services across European Reference Network for rare Inherited and Congenital Anomalies (ERNICA) member and affiliate centers.

methodsA REDCap questionnaire was sent to clinical leads of 18 ERNICA members and 14 affiliate centers.

results29 of 32 centers responded (91%), the majority of which were highly specialized. Two-thirds had a dedicated EA clinic with a specialist multi-disciplinary team (MDT), offered to selected/complex patients only in 40% of centers. ERNICA centers were more likely to offer an MDT FU clinic than affiliates, with lack of resources most cited as a barrier to uptake (67%). Delivery of routine investigations was heterogeneous, particularly provision of three endoscopies over the course of FU (24%). Only 55% had a dedicated transition pathway, more prevalent in ERNICA centers (81% vs. 30%; p < 0.01). Self-reported awareness of ERNICA and European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) guidance for FU and transition was poor (28%).

conclusionDespite the existence of European follow-up and transition guidelines, their delivery is not uniform and may be limited by lack of awareness of the guidelines and a lack of resources.

Indexed as

Esophageal AtresiaEuropeFollow-Up StudiesHumansInfant, NewbornRare DiseasesSurveys and QuestionnairesEsophageal atresiaEuropean reference networksFollow-upTransition

Identifiers

PMID39521743
PMCPMC11550284

What OpenQuestion holds

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Registered trials

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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.