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