Transition to Adult Care in Autoinflammatory Diseases

Author:

Elhani InèsORCID,Hentgen Véronique1ORCID,Quartier Pierre2ORCID,Bader-Meunier Brigitte2ORCID,Kone-Paut Isabelle3ORCID,Neven Bénédicte2ORCID,Rossi Linda4ORCID,Faye Albert3,Meinzer Ulrich5ORCID,Melki Isabelle5ORCID,Grateau Gilles6ORCID,Savey Léa6ORCID,Georgin-Lavialle Sophie6ORCID

Affiliation:

1. Versailles Hospital, Department of Pediatrics, Le Chesnay

2. Department of Pediatric Rheumatology, Necker Hospital, Paris

3. Pediatric Rheumatology

4. Pediatrics, Bicêtre Hospital, Kremlin-Bicêtre

5. Department of Pediatric Rheumatology, Robert-Debré Hospital, Paris, France.

6. Department of Internal Medicine, Tenon Hospital, Paris

Abstract

Background Transitioning from pediatric to adult care is a critical step for individuals with autoinflammatory diseases, requiring effective programs to ensure continuity of care and disease management. Despite various recommendations, the effectiveness of transition programs, particularly in monogenic autoinflammatory diseases, remains understudied. Methods A single-center medical records review study was conducted at the French National Reference Center for Adult Autoinflammatory Diseases in Tenon Hospital from 2017 to 2023. All patients who had consulted for the first time between the ages of 15 and 30 years and had received care for an autoinflammatory disease during childhood were included. The patients were classified according to whether they had undergone a transition, defined as either no transition, simple transition (referral letter), or joint transition (pediatrician and adult physician consultation). Results One hundred eleven patients (median age, 18 years) were included. Patients who consulted without transition started adult follow-up and were followed up less regularly than those who underwent the transition process (p < 0.001 and p = 0.028). In patients with familial Mediterranean fever, the absence of a formal transition was associated with poorer disease control at baseline (p = 0.019). The type of transition did not impact disease control during follow-up. Conclusions Participation in a transition program is associated with earlier and more regular follow-up in adulthood. Although transition type did not significantly impact disease control during follow-up in familial Mediterranean fever, the potential benefit of joint consultation extends beyond consultation frequency and disease outcomes, encompassing patient perspectives and self-management abilities. This study highlights the significance of collaborative transition programs in AIDs.

Publisher

Ovid Technologies (Wolters Kluwer Health)

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