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.

Recommendations for transitioning young people with Primary Immunodeficiency Disorders and Autoinflammatory Diseases to adult care

“…Improved for young patients with IEI have brought about the challenge of safe, effective, and e cient transfer of care to adult health services [13][14][15][16][17]. This paper outlines recommendations for best practice guidance for the varied elements of the transition process -from structuring transition clinic appointments to the content of educational programmes for young patients with PID or AID, which make up the majority of IEI.…”

Mediterranean Journal of Rheumatology September 2018 Highlights

“…Pratsidou and collaborators review this emerging topic and describe the coordinated, cooperative plan required by the transition team, the patient and its family. 5 The Authors take us through the general frames for transition issued by the American College of Physicians, the American College of Rheumatologists and the EULAR/ Paediatric Rheumatology European Society (PReS) Transition recommendations. More importantly, however, the authors, stemming from their long-lasting experience, discuss the implementation of these policies taking into consideration the local infrastructure and the family/patient cultural background and the fact that caregivers of Mediterranean countries differ from Northern European In their case study, Marketos et al 7 describe a young woman with rheumatoid arthritis with fever and rapid, destructive joint involvement, who responded to Canakinumab administration after treatment failure to a series of medications including methotrexate and leflunomide, anti-TNF, IL-6 inhibitor, B cell depletion and IL-1RA.…”