Eur J Pediatr Surg 2025; 35(02): 128-134
DOI: 10.1055/s-0044-1791248
Original Article

ERN eUROGEN Guidelines on the Management of Anorectal Malformations, Part IV: Organization of Care and Communication between Providers

Ophelia Aubert 
1   Department of Pediatric Surgery, University Medical Center Mannheim, University of Heidelberg, Mannheim, Germany
,
Willemijn 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
,
Paola Midrio
9   Pediatric Surgery Unit, Cà Foncello Hospital, Treviso, Veneto, Italy
,
Marc Miserez
10   Department of Abdominal Surgery, UZ Leuven, KU Leuven, Leuven, Flanders, Belgium
,
Sabine Sarnacki
6   Department of Pediatric Surgery, Urology and Transplantation, Hôpital Necker Enfants Malades, APHP, Université de Paris Cité - National Rare Disease Center MAREP, Paris, France
,
Eberhard Schmiedeke 
11   Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Bremen, Germany
,
Cornelius Sloots
12   Department of Pediatric Surgery, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands
,
Pernilla Stenström 
13   Department of Pediatrics, Clinical Sciences Lund University, Skane University Hospital Lund, Lund, Sweden
,
Nicole Schwarzer   *
14   Selfhelp Organization for Parents and Patients Born with Anorectal Malformations—SoMA e.V., Munich, Germany
,
Jan-Hendrik Gosemann   *
8   Department of Pediatric Surgery, University Hospital Leipzig, Leipzig, Germany
› Author Affiliations
Funding This study was supported by the European Union.
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Abstract

Introduction Being born with an anorectal malformation (ARM) can have profound and lifelong implications for patients and parents. Organization of care and communication between health care providers is an overlooked area of patient care. The European Reference Network eUROGEN for rare and complex urogenital conditions 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 basis for the development of guidelines. 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 seven 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 all available evidence, expert consensus, and the European context.

Results Aspects pertaining to organization of care, patient/parent/health care provider communication, and referral and collaboration between providers caring for ARM patients were assessed. Two new studies were identified. In total, the panel adapted 12 recommendations, adopted 7, and developed 2 de novo. The overall level of newly found evidence was considered low and most recommendations were based on expert opinion.

Conclusion Collaborative care and organization of care are gaining importance in the field of ARM. This guideline gives practical guidance on how to achieve better communication and collaboration between all involved parties, applicable at the European level.

Keywords

ARM - collaborative care - communication

Collaboration

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


* Nicole Schwarzer and Jan-Hendrik Gosemann contributed equally to this article.


Supplementary Material



Publication History

Received: 14 August 2024

Accepted: 27 August 2024

Article published online:
11 October 2024

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