< Back Improving the Transition of Care in Adolescents with Chronic Intestinal Failure: Development and Implementation of a Practical Protocol Aug 19, 2025 Improving the Transition of Care in Adolescents with Chronic Intestinal Failure (CIF): Development and Implementation of a Practical Protocol Background Over the past decades, the life expectancy of children with chronic intestinal failure (CIF) who depend on home parenteral nutrition (HPN) has significantly improved. As a result, an increasing number of these children are surviving into adulthood and require transfer to adult care. However, this transition can be challenging and risky due to the complexity of their condition, the technical aspects of HPN care, and the psychosocial vulnerabilities associated with adolescence. Despite the clear need, there was until recently no standardized protocol to guide healthcare providers through this critical process. What we did To address this gap, an international working group of healthcare professionals affiliated with ERNICA and NITE (ESPGHAN) developed the first consensus-based, practical transition protocol for adolescents with CIF on HPN. This was accomplished through a two-step process: 1) An online survey among 80 CIF experts from 33 centers in 17 countries, who were asked to evaluate 20 proposed transition interventions. 2) A face-to-face consensus meeting with clinicians and patient representatives to finalize the protocol based on effectiveness and feasibility. Findings from the study Parallel to the development of the protocol, a large international cross-sectional study was conducted using the Transition Readiness Assessment Questionnaire (TRAQ). Among 57 adolescents and young adults with CIF on HPN, 65% were found not ready for transition. The lowest readiness scores were observed in: - Patients aged 16–18 years, who are about to transition or have just transitioned to adult care - Male patients - Patients still in pediatric care These findings underline the urgent need for structured, tailored transition planning. The 10 Key Interventions of the Transition Protocol The final transition protocol consists of 10 practical steps, all of which are tailor-made based on the maturity and needs of the patient. These interventions serve as a checklist and framework for CIF teams in pediatric and adult care. 1) Start the transition process 1–2 years before transfer. Early preparation allows sufficient time to assess the patient’s developmental progress, gradually shift responsibilities, and prevent last-minute crises. 2) Psychological screening of the patient before transition. Transition is a high-stress period. Screening for anxiety, depression, trauma, or other mental health challenges ensures timely support. 3) Patient education and medical summary. a. The pediatric physician assesses the patient’s understanding of their condition. b. A healthcare professional provides disease-specific education, including HPN management. c. The pediatric physician provides a written medical summary for the patient and adult team. 4) Assessment of autonomy and maturity. a. The pediatric physician evaluates the patient’s independence in managing medical care. b. Sensitive topics such as sexuality, substance use, and physical health are addressed as appropriate. 5) Pediatric physician initiates the discussion about transition with patients and parents. Clear and early communication helps align expectations and reduces anxiety. 6) Encourage patient-centered consultations. a. Healthcare providers/pediatric physician should direct questions to the adolescent, not the parents. b. At times, parents may be asked to wait outside to promote patient autonomy. 7) Teach self-management skills. The patient is trained in practical tasks such as medication management, making appointments, and contacting the pediatric medical team. 8) Structured communication between pediatric and adult teams. A formal handover, including written summaries and telephone calls, helps ensure continuity of care. 9) Joint consultation with both pediatric and adult providers. A shared outpatient visit or video call involving the adolescent, parents, and both care teams fosters trust and smoothens the transfer. 10) Assign a nurse specialist as a transition coordinator. A nurse who works in both pediatric and adult settings can act as a liaison and ensure follow-up on transition goals. These ten interventions form the basis of a structured, patient-focused transition process for adolescents with CIF on HPN. By addressing both medical and psychosocial needs, and by involving pediatric and adult teams alongside patients and their parents, the protocol hopes to help to reduce transition-related risks and supports long-term self-management. The protocol reflects expert consensus and clinical best practices, but its true value lies in consistent implementation and evaluation. Next Steps Implementation of this protocol across participating centers will be needed. Articles/references 1. Demirok A, Benninga MA, Diamanti A, El Khatib M, Guz‑Mark A, Hilberath J, Lambe C, Norsa L, Pironi L, Sanchez AA, Serlie M, Tabbers MM. Transition from pediatric to adult care in patients with chronic intestinal failure on home parenteral nutrition: How to do it right? Clin Nutr. 2024 Aug;43(8):1844–1851. doi:10.1016/j.clnu.2024.06.019 2. Demirok A, Benninga MA, Diamanti A, El Khatib M, Guz‑Mark A, Hilberath J, Lambe C, Norsa L, Sasdelli AS, Sanchez AA, Serlie M, Tabbers MM, et al. Transition readiness assessment in adolescents and young adults with chronic intestinal failure on home parenteral nutrition: a descriptive cross‑sectional study. JPEN J Parenter Enteral Nutr. 2025 Jul;49(5):599‑608. doi:10.1002/jpen.2747 Previous Next

< Back ERS Panel discussion on lifelong respiratory care in OA/TOF & CDH Oct 28, 2025 Panel discussion on lifelong respiratory care in OA/TOF & CDH: paediatric and adult collaboration - 29 OCTOBER, 2025 We are proud to announce that ERNICA will be prominently represented in an upcoming Panel Discussion on Lifelong Respiratory Care in OATOF, CDH, Paediatric and Adult Collaboration (29 October 2025), hosted by ERS. The ERNICA Coordinator and one of our Patient Representatives have been invited to join this important forum, bringing the perspectives of both clinical leadership and lived experience. Their participation underscores ERNICA’s commitment to bridging pediatric and adult care pathways and to ensuring patient voices help shape the future of respiratory management in rare disease contexts. More information here: Panel discussion on lifelong respiratory care in OA/TOF & CDH: paediatric and adult collaboration - 29 OCTOBER, 2025 - Panel discussion on lifelong respiratory care in OA/TOF & CDH: paediatric and adult collaboration - 29 OCTOBER, 2025 - ERS Respiratory Channel Previous Next

< Back New ERNICA Publication Artificial Intelligence Competencies and Educational Needs Among ERNICA Members Sep 2, 2026 Our multinational survey of ERNICA members highlights an important reality: the healthcare community recognizes the promise of AI, but significant educational gaps remain. Key findings: Nearly half of respondents are already using AI applications. 94% reported no formal AI training. Reliability, accuracy, and ethical implications are among the biggest concerns. As AI becomes increasingly integrated into healthcare, developing the skills and confidence to use these tools responsibly will be just as important as the technology itself. Read the paper here: https://pubmed.ncbi.nlm.nih.gov/41558661/ Previous Next

< Back University Hospital Motol Czech Republic This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Short Bowel Syndrome Previous Next

< Back Marlinde van der Kamp Project Manager ERNICA/EPSA registry m.vanderkamp@dica.nl

< Back ERNICA 9th annual meeting, Frankfurt, Germany Apr 2, 2025 The 9th ERNICA annual meeting will be hosted by our members at Universitätsklinikum Frankfurt. The annual meeting is scheduled for April 2-4 ,2025. Please save the date in your agenda. More information will follow end this year. Previous Next

< Back Call on the EU institution and EU Member States' governments to stand by the European Reference Networks Oct 6, 2023 The European Reference Network representatives and people living with a rare disease across Europe, call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access timely and adequate specialised healthcare. In particular, ERNs ask for Secure long-term financial stability Designate Affiliated Partners and expand the disease coverage Support greater cross-ERN collaboration Establish treatment eligibility and molecular therapeutic panels Fully integrate ERNs into national health system services Urgently define and systematically collect and monitor health and experienced-based outcome measures Better support and recognition of the contribution of volunteer patient organisations, patient representatives, healthcare providers and clinicians in the Networks The complete letter can be found here Previous Next

< Back Hospital Universitari Vall d'Hebron Spain This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Eosinophilic Esophagitis Esophageal Atresia Gastroschisis Necrotizing Enterocolitis Rare Inflammatory Bowel Diseases Previous Next

< Back Hospital Center University De Lille France This centre has expertise for ERNICA in: Achalasia Congenital Diaphragmatic Hernia Congenital Esophageal Stenosis Congenital Hiatus Hernia Duodenal And Small Bowel Atresia Eosinophilic Esophagitis Esophageal Atresia Gastroschisis Morbus Hirschsprung Omphalocele Short Bowel Syndrome Previous Next

< Back Sant Joan de Déu Barcelona Hospital Spain This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Eosinophilic Esophagitis Esophageal Atresia Morbus Hirschsprung Necrotizing Enterocolitis Rare Inflammatory Bowel Diseases Previous Next

SoMA e.V. is the German patient organisation that helps with questions about treatment, follow-up and psychosocial aspects of Anorectal Malformation (ARM), Hirschsprung's Disease (HD) and Cloacal Exstrophy. < Back SoMA SoMA e.V. is the German patient organisation that helps with questions about treatment, follow-up and psychosocial aspects of Anorectal Malformation (ARM), Hirschsprung's Disease (HD) and Cloacal Exstrophy. Previous Next

< Back Rebecca Pulvirenti CPMS Helpdesk cpmshelpdesk@ernica.ern-net.eu