Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture

de Beaufort, Cunera M.C.; Aminoff, Dalia; de Blaauw, Ivo; Crétolle, Célia; Dingemann, Jens; Durkin, Natalie; Feitz, Wout F.J.; Fruithof, JoAnne; Grano, Caterina; Burgos, Carmen Mesas; Schwarzer, Nicole; Slater, Graham; Soyer, Tutku; Violani, Cristiano; Wijnen, Rene; de Coppi, Paolo; Gorter, Ramon R.; Abbo, Olivier; Angotti, Rossella; Antunovic, Sanja Sindjic; Anzelewicz, Stefan; Arneitz, Christoph; Arnold, Marion; Assi, Zaki; Aydin, Emrah; Ballouhey, Quentin; Barila, Patricia; Basson, Sonia; Besendorfer, Manuel; Di Cesare, Antonio; Dariel, Anne; Dekeryte, Inga; Djordjevic, Ivona; Domenichelli, Vincenzo; Duranteau, Lise; Durakbasa, Cigdem; Ebert, Anne-Karoline; Ellerkamp, Verena; Leon, Francesco Fascetti; Fisch, Margit; Vazquez, Araceli García; Gielok, Christoph; Bahadir, Gulnur Gollu; Haecker, Frank-Martin; Holmdahl, Gundela; Irtan, Sabine; Jones, Ceri; Kakar, Mohit; Keshtgar, Ali; Kvist, Kolja; Laconi, Francesco; Laurance, Marie; Candel, Eduardo Lopez; Ludwiczek, Johanna; Ludwikowski, Barbara; Macchini, Francesco; Malota, Mark; Matthyssens, Lucas; Martin, Benjamin; Martinez, Leopoldo; Midrio, Paola; Miserez, Marc; Mosiello, Giovanni; Pascual, Francisco Murcia; Nunez, Bernardo; Olén, Roger; Öztorun, Can İhsan; Parlak, Ayse; Prato, Alessio Pini; Poupalou, Anna; Arias, Marcos Prada; Prat, Jordi; Gil, Carlos Pueyo; Avila Ramirez, Luis Felipe; Reingruber, Bertram; Riccipetitoni, Giovanna; Riechardt, Silke; Risteski, Toni; Rogula, Wojciech; Rolle, Udo; Romeo, Carmelo; Schäfer, Frank-Mattias; Scirè, Gabriella; Sfeir, Rony; Singer, Georg; Sloots, Pim; Stanton, Michael; Stenström, Pernilla; Stockinger, Maria; Surhan, M.; Suominen, Janne; Syed, Julia; Talon, Isabelle; Tanriverdi, Halil Ibrahim; Uzunlu, Osman; Valfre, Laura; Witvliet, Marieke; Zambaiti, Elisa; Zanatta, Cinzia; Zani, Augusto

doi:10.1016/j.jpedsurg.2023.06.008

Cited by 10 publications

(6 citation statements)

References 32 publications

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“…Once the diagnosis is made, rectal irrigations are initiated to evacuate stool and thereby decompress the colon 173 , 174 . For short-segment HSCR, definitive pull-through surgery is typically performed within the first few months of life.…”

Section: Colorectalmentioning

confidence: 99%

“…Transitional care pathways and adult care programmes for congenital anorectal disorders are not widely adopted 174 , 191 , 192 . The authors are not aware of specific adult guidelines for patients with Hirschsprung disease; however, the ERNICA guidelines for the management of rectosigmoid Hirschsprung disease do include recommendations for adult follow-up 171 .…”

Section: Colorectalmentioning

confidence: 99%

“…Patients with HSCR and anorectal malformations therefore require continuous structured healthcare follow-up and support throughout childhood and beyond as functional problems can persist well into adulthood and correlate with social disability and decreased QoL 174 . Patients who continue to experience significant psychosocial limitations in the long term highlight the crucial need for robust transitional care arrangements 197 .…”

Section: Colorectalmentioning

confidence: 99%

“…Most importantly, wide interdisciplinary collaboration between paediatric and adult colorectal surgeons, gastroenterologists and other pertinent healthcare professionals is essential as these patients transition into adulthood. As mentioned in the previous section, transitional care pathways for anorectal disorders are not widely adopted, and more so, adult care programmes 174 , 191 , 192 . The authors are not aware of adult guidelines for patients with anorectal malformations.…”

Section: Colorectalmentioning

confidence: 99%

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Major surgical conditions of childhood and their lifelong implications: comprehensive review

Cullis,

Fouad,

Goldstein

et al. 2024

BJS Open

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Background In recent decades, the survival of children with congenital anomalies and paediatric cancer has improved dramatically such that there has been a steady shift towards understanding their lifelong health outcomes. Paediatric surgeons will actively manage such conditions in childhood and adolescence, however, adult surgeons must later care for these ‘grown-ups’ in adulthood. This article aims to highlight some of those rare disorders encountered by paediatric surgeons requiring long-term follow-up, their management in childhood and their survivorship impact, in order that the adult specialist may be better equipped with skills and knowledge to manage these patients into adulthood. Methods A comprehensive literature review was performed to identify relevant publications. Research studies, review articles and guidelines were sought, focusing on the paediatric management and long-term outcomes of surgical conditions of childhood. The article has been written for adult surgeon readership. Results This article describes the aforementioned conditions, their management in childhood and their lifelong implications, including: oesophageal atresia, tracheo-oesophageal fistula, malrotation, short bowel syndrome, duodenal atresia, gastroschisis, exomphalos, choledochal malformations, biliary atresia, Hirschsprung disease, anorectal malformations, congenital diaphragmatic hernia, congenital lung lesions and paediatric cancer. Conclusion The increasing survivorship of children affected by surgical conditions will translate into a growing population of adults with lifelong conditions and specialist healthcare needs. The importance of transition from childhood to adulthood is becoming realized. It is hoped that this timely review will enthuse the readership to offer care for such vulnerable patients, and to collaborate with paediatric surgeons in providing successful and seamless transitional care.

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Section: Colorectalmentioning

confidence: 99%

Section: Colorectalmentioning

confidence: 99%

Section: Colorectalmentioning

confidence: 99%

Section: Colorectalmentioning

confidence: 99%

See 2 more Smart Citations

Major surgical conditions of childhood and their lifelong implications: comprehensive review

Cullis,

Fouad,

Goldstein

et al. 2024

BJS Open

View full text Add to dashboard Cite

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“…The fields of cardiology and pulmonology have achieved this well with transition programs for congenital heart disease and cystic fibrosis. Similarly, colorectal care needs to expand efforts to create a transition plan for pediatric patients as they enter adulthood [60][61][62].…”

Section: Transition Of Care To Adulthoodmentioning

confidence: 99%

Is Collaborative Care the Future of Medicine? Lessons Learned from the Care of Children with Colorectal Conditions

Choueiki,

Sales,

Callicott

et al. 2024

Children

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The treatment of patients with colorectal disorders requires care from a wide variety of medical and surgical specialties over the course of their lifetime. This is ideally handled by a collaborative center which facilitates the assessment and development of patient care among multiple specialties which can enhance the quality and implementation of treatment plans, improve communication among different specialties, decrease morbidity, and improve patient satisfaction and outcomes. This collaborative approach can serve as a model for other parts of medicine requiring a similar multi-disciplinary and integrated method of care delivery. We describe the process, as well as the lessons learned in developing such a program.

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Follow-up and transition practices in esophageal atresia: a review of European Reference Network on rare Inherited and Congenital Anomalies (ERNICA) centres and affiliates

Durkin,

Pellegrini,

Gorter

et al. 2024

Pediatr Surg Int

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Purpose The purpose of this study was to understand the provision and distribution of esophageal atresia (EA) follow-up (FU) and transition services across European Reference Network for rare Inherited and Congenital Anomalies (ERNICA) member and affiliate centers. Methods A REDCap questionnaire was sent to clinical leads of 18 ERNICA members and 14 affiliate centers. Results 29 of 32 centers responded (91%), the majority of which were highly specialized. Two-thirds had a dedicated EA clinic with a specialist multi-disciplinary team (MDT), offered to selected/complex patients only in 40% of centers. ERNICA centers were more likely to offer an MDT FU clinic than affiliates, with lack of resources most cited as a barrier to uptake (67%). Delivery of routine investigations was heterogeneous, particularly provision of three endoscopies over the course of FU (24%). Only 55% had a dedicated transition pathway, more prevalent in ERNICA centers (81% vs. 30%; p < 0.01). Self-reported awareness of ERNICA and European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) guidance for FU and transition was poor (28%). Conclusion Despite the existence of European follow-up and transition guidelines, their delivery is not uniform and may be limited by lack of awareness of the guidelines and a lack of resources.

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Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture

Cited by 10 publications

References 32 publications

Major surgical conditions of childhood and their lifelong implications: comprehensive review

Major surgical conditions of childhood and their lifelong implications: comprehensive review

Is Collaborative Care the Future of Medicine? Lessons Learned from the Care of Children with Colorectal Conditions

Follow-up and transition practices in esophageal atresia: a review of European Reference Network on rare Inherited and Congenital Anomalies (ERNICA) centres and affiliates

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