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

Aubert, Ophelia ; Irvine, Willemijn ; Aminoff, Dalia ; de Blaauw, Ivo ; Cascio, Salvatore ; Cretolle, Célia ; Iacobelli, Barbara Daniela ; Lacher, Martin ; Mantzios, Konstantinos and Midrio, Paola , et al. (2024) In European Journal of Pediatric Surgery
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,... (More)

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.

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organization
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type
Contribution to journal
publication status
epub
subject
keywords
ARM, collaborative care, communication
in
European Journal of Pediatric Surgery
publisher
Georg Thieme Verlag
external identifiers
  • scopus:85207626444
  • pmid:39393413
ISSN
0939-7248
DOI
10.1055/s-0044-1791248
language
English
LU publication?
yes
id
339aef07-20b1-4362-bd10-051a28b5c013
date added to LUP
2024-12-18 11:18:52
date last changed
2025-07-17 04:19:16
@article{339aef07-20b1-4362-bd10-051a28b5c013,
  abstract     = {{<p>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.</p>}},
  author       = {{Aubert, Ophelia and Irvine, Willemijn and Aminoff, Dalia and de Blaauw, Ivo and Cascio, Salvatore and Cretolle, Célia and Iacobelli, Barbara Daniela and Lacher, Martin and Mantzios, Konstantinos and Midrio, Paola and Miserez, Marc and Sarnacki, Sabine and Schmiedeke, Eberhard and Sloots, Cornelius and Stenström, Pernilla and Schwarzer, Nicole and Gosemann, Jan Hendrik}},
  issn         = {{0939-7248}},
  keywords     = {{ARM; collaborative care; communication}},
  language     = {{eng}},
  publisher    = {{Georg Thieme Verlag}},
  series       = {{European Journal of Pediatric Surgery}},
  title        = {{ERN eUROGEN Guidelines on the Management of Anorectal Malformations, Part IV : Organization of Care and Communication between Providers}},
  url          = {{http://dx.doi.org/10.1055/s-0044-1791248}},
  doi          = {{10.1055/s-0044-1791248}},
  year         = {{2024}},
}