A new international protocol to support the structured and optimal transition of children with chronic intestinal failure on home parenteral nutrition from paediatric to adult care has been published based on a consensus of specialist healthcare advice from experts across Europe and North America.
The new practical guidance is designed to be used by clinicians as a formal checklist that can be placed in the patient’s chart to review and track the transition process by chronic intestinal failure multidisciplinary team members.
While the outlook and life expectancy for children with chronic intestinal failure on home parenteral nutrition have improved dramatically, and there is a need to bridge the gap between paediatric and adult healthcare for these patients, the research team said.
Members of the Intestinal Failure working group of the European Reference Network for Rare Inherited Congenital (gastrointestinal and digestive) Anomalies and the European Society for Paediatric Gastroenterology Hepatology and Nutrition’s Network of Intestinal Failure and Intestinal Transplant in Europe group were sent a survey to analyse 20 interventions for transition.
Alongside this, the experts were given an open-ended question to fill in any other suggestion regarding the most effective intervention they had experience with.
Tailored approach for home parenteral nutrition care transition
Interventions that scored over 80% by all participants were automatically added to the new protocol. These included interventions such as ‘paediatric physician initiates discussion about transfer of care to patients and parents’ and ‘paediatric physician assesses the patient’s understanding of the current health situation’, which scored 95% and 93%, respectively.
Interventions scoring below 50% were excluded, while those scoring between 50 and 80% were discussed in a consensus meeting of experts and patient representatives and included if a unanimous agreement was met. Those discussed at the consensus meeting included interventions such as ‘paediatric physician directs all questions and explanations to patient instead of the parents/caregivers’.
The primary interventions in the final protocol include the assessment of the patient’s transition readiness, provision of knowledge to the patient by the paediatric team, involvement of parents in the transition process and collaboration between the paediatric and adult teams.
The researchers advise that preparation for the transition from paediatric to adult care for children with chronic intestinal failure on home parenteral nutrition should begin one to two years before transition and that the process should be tailored to the individual patient.
They also suggest that future research investigating transition readiness of chronic intestinal failure patients is needed.
Reference
Demirok, A et al. Transition from pediatric to adult care in patients with chronic intestinal failure on home parenteral nutrition: How to do it right? Clinical Nutrition 2024; Jun 20: doi.org/10.1016/j.clnu.2024.06.019.
