Related Experiment Video
Updated: Jun 10, 2025
Vessel-sparing Excision and Primary Anastomosis
Published on: January 7, 2019
ERN eUROGEN Guidelines on the Management of Anorectal Malformations, Part IV: Organization of Care and Communication
Ophelia Aubert1, Willemijn Irvine2, Dalia Aminoff3
1Department of Pediatric Surgery, University Medical Center Mannheim, University of Heidelberg, Mannheim, Germany.
Insights
This study provides European guidelines for managing anorectal malformations (ARM), focusing on improving care organization and communication among healthcare providers for better patient outcomes.
Area of Science:
- Pediatric Surgery
- Urology
- Rare Diseases
Background:
- Anorectal malformations (ARM) present significant lifelong challenges for patients and families.
- Effective care organization and inter-provider communication are critical yet often overlooked aspects of ARM management.
- The European Reference Network eUROGEN convened experts to address these challenges.
Purpose of the Study:
- To develop comprehensive, European-level guidelines for the management of anorectal malformations (ARM).
- To enhance the organization of care and communication strategies for patients with ARM.
- To establish a framework for improved collaboration among healthcare providers involved in ARM care.
Main Methods:
- Guidelines were developed based on the Dutch Quality Standard for ARM.
- A systematic literature search was conducted using Medline, Embase, and Cochrane databases.
- The ADAPTE methodology was employed to integrate the latest evidence, with recommendations assessed by a 15-expert European panel.
Main Results:
- The panel adapted 12, adopted 7, and created 2 new recommendations.
- Key areas addressed include care organization, patient/parent/provider communication, and inter-provider referral/collaboration.
- The evidence base for new findings was limited, with many recommendations relying on expert consensus.
Conclusions:
- Collaborative care models and improved care organization are increasingly vital in ARM management.
- These guidelines offer practical strategies for enhancing communication and collaboration among all stakeholders in ARM care.
- The recommendations are designed for applicability across European healthcare systems.
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.
Related Concept Videos
01:25Assessment of the Rectum and Anus
Rectal Inspection
Begin by inspecting the perianal and anal areas for color, texture, rashes,...
01:26Aneurysm III: Interprofessional Care
01:21Inflammatory Bowel Disease V: Surgical Management
Here are some common surgical interventions for IBD:
01:26Enteral Nutrition I: Orogastric and Nasogastric Feeding
Orogastric (OG) and nasogastric (NG) feeding are two standard methods used for enteral nutrition. Enteral nutrition is often preferred over...
01:27Parentral Nutrition: Centeral and Peripheral Parental Nutrition
PN can be administered through two primary routes:
1. Central Parenteral Nutrition (CPN):
CPN involves delivering a high concentration of nutrients through a large vein. This is typically achieved using a Peripherally Inserted Central Catheter (PICC) or,...
01:22Aneurysm IV: Nursing Management