[The transition of children with rare diseases from pediatric to adult care]. / A ritka betegségben szenvedo gyermekek átvezetése a felnottellátásba.

ABSTRACT

Diagnostics for rare diseases have advanced as a result of technological advancement. Innovative treatments have also made it possible for children with rare disorders to survive into adulthood. Growing up is crucial for someone who has a chronic childhood illness since the change from pediatric to adult treatment comes with new difficulties that might feel like an extra burden from the condition. Transition in rare diseases poses more challenges than in common diseases, because not all health care providers in adult care may have the expertise needed to provide optimal patient care. In addition, longer illness courses and the requirement for adult care in diseases for which there is no prior experience will result from the increasing number of better therapies. Occasionally, new clinical symptoms may appear that are unknown to clinicians. Despite the importance they should have, the majority of rare diseases do not currently have standardized recommendations and standards for the transition phase. Every transfer to adult care should be unique and stick to a predetermined plan. A transition coordinator should ideally work with the pediatrician, the adult specialist, the patient, and parents to support patients during this transition. The needs analysis of caregivers is an essential part in the transition process, too. The parties need to be educated, a protocol outlining the process needs to be developed, and the necessary infrastructure must be in place to support an optimal transition. Orv Hetil. 2022; 163(51) 2021-2026.