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Eur J Pediatr Surg 2023; 33(03): 191-197
DOI: 10.1055/s-0042-1749212
Review Article

The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey

Cristiano Violani
1   Department of Psychology, Faculty of Medicine and Psychology, University of Rome Sapienza, Roma, Lazio, Italy
,
Caterina Grano
1   Department of Psychology, Faculty of Medicine and Psychology, University of Rome Sapienza, Roma, Lazio, Italy
,
Mariana Fernandes
1   Department of Psychology, Faculty of Medicine and Psychology, University of Rome Sapienza, Roma, Lazio, Italy
,
Alessio Pini Prato
2   Umberto Bosio Center for Digestive Diseases, The Children Hospital - AO SS Antonio e Biagio e Cesare Arrigo, Alessandria, Piedmont, Italy
,
Wout F. J. Feitz
3   Department of Pediatric Urology, Radboud Universiteit Nijmegen, Nijmegen, Gelderland, the Netherlands
,
Rene Wijnen
4   Department of Pediatric Surgery, Erasmus MC Sophia, Rotterdam, the Netherlands
,
Michelle Battye
3   Department of Pediatric Urology, Radboud Universiteit Nijmegen, Nijmegen, Gelderland, the Netherlands
,
Nicole Schwarzer
5   SoMA e.V. - Patient Organization, Munich, Germany
,
Annette Lemli
5   SoMA e.V. - Patient Organization, Munich, Germany
,
Duccio Cavalieri
6   Department of Biology, University of Florence, Italian Patient's Organization for Hirschsprung Disease (AMHORI), Firenze, Toscana, Italy
,
Dalia Aminoff
7   Italian Patient's Organization for ARM (AIMAR) - Patient Organization, Via Nomentana, Rome, Italy
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Abstract

This study aimed at evaluating how transition of care is currently being organized in the European Reference Networks (ERNs) health care providers (HCPs) in pediatric areas and in the Anorectal Malformation Network (ARM-Net) Consortium hospitals. An online questionnaire was sent to a total of 80 surgeons, members of or affiliated members of three networks: ARM-Net Consortium, ERN eUROGEN, and ERN ERNICA. Complete information were obtained for 45 HCPs, most of which deal with transition and still see a few adult patients (ca. 10%). Gynecological, gastroenterological, urological, colorectal, and continence issues were the major problems described by adult patients to their physicians, and in line with these prevalent complaints, they are referred to the appropriate adult specialists. Forty percent of patients complain about sexual and fertility problems, but the percentage of andrologists and sexologists involved in the caring of adult patients with ARM/Hirschsprung's disease is low, just above 10.9%. Most hospitals deal with transition, but three basic criteria (i.e., presence of: [1] an official written transitional program, [2] a transitional coordinator, and [3] written information on transition to be handled to patients) are jointly met only by six HCPs. According to the responders, the most important issue requiring improvement is the lack of interest and of specific preparation by adult specialists. The overall results of this exploratory survey confirm the need for the development of comprehensive programs for transition in these rare and complex diseases, and identify the hospitals that, in collaboration with the networks, could share best practices in organizing structured transitional pathways and well follow-ups.

Keywords

anorectal malformation - transitional care - Hirschsprung - congenital - chronic

Hospital La Timone Enfants, Marseille, France.

Odense University Hospital, Odense, Denmark.

Charité University Hospital Berlin, Berlin, Germany.

Mainz University Medical Center, Mainz, Germany.

University Medical Centre Mannheim, Mannheim, Germany.

Radboudumc, Nijmegen, The Netherlands.




Publication History

Received: 17 October 2021

Accepted: 11 February 2022

Article published online:
13 July 2022

© 2022. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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