Transition of pediatric patients with an Auto-inflammatory Disease: an alternative version of the Daedaulus and Icarus myth

Abstract

Progress in the pediatric Auto-inflammatory Diseases (AIDs) has led to improved long-term outcome and the increased pool of pediatric patients who require lifelong monitoring. Implementation of a successful stepwise transition in patients with AIDs denotes the presence of a structured flexible and individualized policy that ensues the stepwise move from family-based pediatric care to adult patient one. This process aims to equip the young adult with self-management skills and the ability to enjoy life even under the burden of a chronic disease. Transition, thus, is a continuously evolutionary process that assists adolescents and young adults with an AID to move into a future that their predecessors with similar diseases never needed to experience. This review, using the myth of Daedalus and Icarus as a scaffold, presents the contemporary profile of the adolescent patient, comments on the evidence derived from Transition recommendations, and emphasizes the need of periodic quantitative assessments to assess the efficacy of the Transition plan. Upon the completion of the transfer to the Adult Center, monitoring of the patient's active participation will support his/her engagement in the new setting.

Keywords: Adolescent health; Auto-inflammatory Disease; Continuity of care; Transition; Transitional Care.