PURPOSE: The aim of the German Network for Congenital Uro-REctal malformations (CURE-Net) is to collect data of affected patients with anorectal malformation (ARM) to investigate molecular causes, clinical implications and psychosocial outcome. The current issue was to examine the transition to adulthood in adults with ARM and to explore condition-related needs and skills required. METHODS: This qualitative study is part of a larger multi-center study of clinical queries and quality of life in patients with ARM. The guided interview focused on the analysis of medical data and personal questionnaires. RESULTS: Interviews were completed with 55 (23 females, 32 males) participants, age ranging from 18 to 56 years. Twenty-one patients suffered from mucosal prolapse, 18 patients had had megasigmoid/megacolon. Relevant stenosis of the neo-anus occurred in 13 (42 %) males and 4 (18 %) females, permanent neurogenic bladder dysfunction in 10 (32 %) males and 4 (18 %) females, recurrent urinary tract infections in 10 (32 %) males and 13 (59 %) females, latex allergy in 10 (32 %) males and 7 (32 %) females. Thirty-seven (70 %) patients had to be reoperated. Forty-one (75 %) patients needed means of aftercare to achieve social continence. CONCLUSION: The study wants to contribute to a better understanding of the challenges of transition for adults with ARM.
PURPOSE: The aim of the German Network for Congenital Uro-REctal malformations (CURE-Net) is to collect data of affected patients with anorectal malformation (ARM) to investigate molecular causes, clinical implications and psychosocial outcome. The current issue was to examine the transition to adulthood in adults with ARM and to explore condition-related needs and skills required. METHODS: This qualitative study is part of a larger multi-center study of clinical queries and quality of life in patients with ARM. The guided interview focused on the analysis of medical data and personal questionnaires. RESULTS: Interviews were completed with 55 (23 females, 32 males) participants, age ranging from 18 to 56 years. Twenty-one patients suffered from mucosal prolapse, 18 patients had had megasigmoid/megacolon. Relevant stenosis of the neo-anus occurred in 13 (42 %) males and 4 (18 %) females, permanent neurogenic bladder dysfunction in 10 (32 %) males and 4 (18 %) females, recurrent urinary tract infections in 10 (32 %) males and 13 (59 %) females, latex allergy in 10 (32 %) males and 7 (32 %) females. Thirty-seven (70 %) patients had to be reoperated. Forty-one (75 %) patients needed means of aftercare to achieve social continence. CONCLUSION: The study wants to contribute to a better understanding of the challenges of transition for adults with ARM.
Authors: M J Hanneman; M A Sprangers; E L De Mik; L W Ernest van Heurn; Z J De Langen; N Looyaard; G C Madern; P N Rieu; D C van der Zee; M van Silfhout; D C Aronson Journal: Dis Colon Rectum Date: 2001-11 Impact factor: 4.585
Authors: Esther E Hartman; Mirjam A G Sprangers; Mechteld R M Visser; Frans J Oort; Marianne J G Hanneman; L W Ernest van Heurn; Zacharias J de Langen; Gerard C Madern; Paul N M A Rieu; David C van der Zee; N Looyaard; Daniel C Aronson Journal: J Pediatr Gastroenterol Nutr Date: 2005-08 Impact factor: 2.839
Authors: Long Li; Yan Zhou; Anxiao Ming; Hang Xu; Qi Li; Xu Li; Guimin Huang; Yu Tian; Yurui Wu; Jun Tai; Xianghui Xie; Paul K H Tam; Qinglong Gu; Mei Diao Journal: Pediatr Surg Int Date: 2022-05-20 Impact factor: 1.827
Authors: M J Witvliet; N Petersen; E Ekkerman; C Sleeboom; E van Heurn; A F W van der Steeg Journal: Tech Coloproctol Date: 2017-07-03 Impact factor: 3.781
Authors: Joanne E Martin; William English; John V Kendall; Vinayata Sheshappanavar; Sara Peroos; Milly West; Stewart Cleeve; Charles Knowles Journal: J Clin Pathol Date: 2021-05-25 Impact factor: 4.463
Authors: Thomas Bjoersum-Meyer; Lasse Kaalby; Lars Lund; Peter Christensen; Marianne S Jakobsen; Gunnar Baatrup; Niels Qvist; Mark Ellebaek Journal: Eur Urol Open Sci Date: 2021-02-03