Stefano Giuliani1, Caterina Grano2, Dalia Aminoff3, Nicole Schwarzer4, Mariette Van De Vorle5, Celia Cretolle6, Michel Haanen7, Giulia Brisighelli8, Stefanie Marzheuser9, Martin Connor10. 1. Department of Specialist Neonatal and Pediatric Surgery, Great Ormond Street Hospital for Children, Great Ormond Street, WC1N 3JH London, United Kingdom. Electronic address: stefano.giuliani@gosh.nhs.uk. 2. Department of Psychology, Sapienza University of Rome, Via dei Marsi, 78, 00185 Rome, Italy. 3. AIMAR-Italian Patients' and Parents' Organization for Anorectal Malformation, Via Tripolitania, 211, Rome, Italy. 4. SoMA e.V.-German organization for people with ARM/HD, Korbinianplatz 17, D-80807 Munich, Germany. 5. Department of Pediatric Surgery, Radboudumc Amalia Children's Hospital, Postbus 9101, 6500 HB, Nijmegen, The Netherlands. 6. National Reference Centre for Rare Diseases on Anorectal Malformations and Rare Pelvic Anomalies (MAREP), Rare Diseases National Network NeuroSphinx, Necker-Enfants Malades Hospital, APHP, René Descartes University, Paris, France. 7. "Vereniging Anusatresie" Postbus 78, 1270 AB Huizen, The Netherlands. 8. Department of Pediatric Surgery, Fondazione IRCCS Ca' Granda-Ospedale Maggiore Policlinico, Via della Commenda 10, 20122, Milano, Italy. 9. Department of Pediatric Surgery, Charité Uniklinik Abt., Kinderchirurgie, Augustenburger Platz, 1, Berlin, Germany. 10. Department of Surgery, Charing Cross Hospital, Imperial College Healthcare NHS Trust, Fulham Palace Road, London W6 8RF, United Kingdom.
Abstract
OBJECTIVES: To develop the first consensus to standardize the management of patients with Anorectal Malformations (ARMs) transitioning from childhood to adulthood. METHODS: A dedicated task force of experts performed an extensive literature review and multiple meetings to define the most important aspects of transition of care. The findings were discussed with all ARM-net consortium members and a set of practical recommendations agreed upon at the annual meeting in 2016. RESULT: We defined seven domains that are essential to provide an effective and practical transition process. Within each domain we have developed a set of key recommendations that are important to be considered for ARM patients entering the age of transition. CONCLUSIONS: It is crucial that transition begins at an early age with regular and well-structured follow-up. Cooperation with a selected multidisciplinary team of pediatric and adult practitioners is required to prepare patients and families for effective transition to adult care and to reduce long term morbidity. TYPE OF STUDY: Review/Consensus paper. LEVEL OF EVIDENCE: III.
OBJECTIVES: To develop the first consensus to standardize the management of patients with Anorectal Malformations (ARMs) transitioning from childhood to adulthood. METHODS: A dedicated task force of experts performed an extensive literature review and multiple meetings to define the most important aspects of transition of care. The findings were discussed with all ARM-net consortium members and a set of practical recommendations agreed upon at the annual meeting in 2016. RESULT: We defined seven domains that are essential to provide an effective and practical transition process. Within each domain we have developed a set of key recommendations that are important to be considered for ARM patients entering the age of transition. CONCLUSIONS: It is crucial that transition begins at an early age with regular and well-structured follow-up. Cooperation with a selected multidisciplinary team of pediatric and adult practitioners is required to prepare patients and families for effective transition to adult care and to reduce long term morbidity. TYPE OF STUDY: Review/Consensus paper. LEVEL OF EVIDENCE: III.
Authors: M C Vargas; L A Wehrli; A Louiselle; J Ketzer; M L Reppucci; L Juddy-Glossy; V I Alaniz; D T Wilcox; D N Wood; A Peña; L De La Torre; A Bischoff Journal: Pediatr Surg Int Date: 2022-09-21 Impact factor: 2.003
Authors: Monica Mazzucato; Laura Visonà Dalla Pozza; Cinzia Minichiello; Silvia Manea; Sara Barbieri; Ema Toto; Andrea Vianello; Paola Facchin Journal: Int J Environ Res Public Health Date: 2018-10-10 Impact factor: 3.390