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Eur J Pediatr Surg
DOI: 10.1055/s-0044-1791249
Original Article

ERN eUROGEN Guidelines on the Management of Anorectal Malformations Part III: Lifelong Follow-up and Transition of Care

Ophelia Aubert 
1   Department of Pediatric Surgery, University Medical Center Mannheim, University of Heidelberg, Mannheim, Germany
,
Willemijn F.E. Irvine
2   Department of Evidence Based Medicine and Methodology, Qualicura Healthcare Support Agency, Breda, The Netherlands
,
Dalia Aminoff
3   AIMAR-Associazione Italiana Malformazioni AnoRettali, Rome, Italy
,
Ivo de Blaauw 
4   Department of Pediatric Surgery, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands
,
Salvatore Cascio
5   Department of Pediatric Surgery, School of Medicine, University College Dublin and Children's Health Ireland, Dublin, Ireland
,
Célia Cretolle
6   Department of Pediatric Surgery, Urology and Transplantation, Hôpital Necker Enfants Malades, APHP, Université de Paris Cité - National Rare Disease Center MAREP, Paris, France
,
Barbara Daniela Iacobelli
7   Medical and Surgical Department of the Fetus-Newborn-Infant, Ospedale Bambin Gesù, Rome, Italy
,
Martin Lacher
8   Department of Pediatric Surgery, University Hospital Leipzig, Leipzig, Germany
,
Konstantinos Mantzios
2   Department of Evidence Based Medicine and Methodology, Qualicura Healthcare Support Agency, Breda, The Netherlands
,
Marc Miserez
9   Department of Abdominal Surgery, UZ Leuven, KU Leuven, Leuven, Flanders, Belgium
,
Sabine Sarnacki
10   Department of Pediatric Surgery, Urology and Transplantation, Hôpital Necker Enfants Malades, APHP, Université de Paris Cité, Paris, Île-de-France
,
Eberhard Schmiedeke 
11   Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Bremen, Germany
,
Nicole Schwarzer
12   Selfhelp Organization for Parents and Patients Born with Anorectal Malformations - SoMA e.V., Munich, Germany
,
Cornelius Sloots
13   Department of Pediatric Surgery, Erasmus Medical Center – Sophia Children's Hospital, Rotterdam, The Netherlands
,
Pernilla Stenström 
14   Department of Pediatrics, Clinical Sciences Lund University, Skane University Hospital Lund, Lund, Sweden
,
Paola Midrio   *
15   Pediatric Surgery Unit, Cà Foncello Hospital, Treviso, Veneto, Italy
,
Jan-Hendrik Gosemann   *
8   Department of Pediatric Surgery, University Hospital Leipzig, Leipzig, Germany
› Author Affiliations Funding European Union.
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Abstract

Introduction Anorectal malformations (ARMs) are complex congenital anomalies of the anorectal region, oftentimes also affecting the genitourinary system. Although successful surgical correction can often be achieved in the neonatal period, many children will experience functional problems in the long term. The European Reference Network for rare and complex urogenital conditions (eUROGEN) assembled a panel of experts to address these challenges and develop comprehensive guidelines for the management of ARM.

Methods The Dutch Quality Standard for ARM served as the foundation for the development of guidelines applicable on a European level. Literature was searched in Medline, Embase, and Cochrane. The ADAPTE method was utilized to incorporate the newest available evidence. A panel of 15 experts from 7 European countries assessed currency, acceptability, and applicability of recommendations. Recommendations from the Dutch Quality Standard were adapted, adopted, or rejected and recommendations were formed considering the current evidence and/or expert consensus.

Results Lifelong follow-up, integration, and transition of care were assessed. A total of eight new studies were identified. The panel adapted 18 recommendations, adopted 6, and developed 6 de novo. Overall, the level of evidence was considered low.

Conclusion Successful lifelong follow-up and transition of care require a dedicated team of pediatric and adult specialist and an individually tailored patient-centered approach. This guideline summarizes the best available evidence on follow-up of ARM patients and provides guidance for the development of structured transition programs.

Keywords

ARM - adulthood - follow-up - transitional care - consensus statement

Collaboration

This work was performed in collaboration with experts involved in ERN ERNICA, EUPSA, and Qualicura.


* These authors contributed equally.


Supplementary Material



Publication History

Received: 14 August 2024

Accepted: 27 August 2024

Article published online:
19 September 2024

© 2024. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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