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Lookup NU author(s): Professor Andrew GenneryORCiD, Dr Suzanne Elcombe, Professor Mary Slatter
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© The Author(s) 2024.Purpose: Significant improvements in the prognosis for young patients with Primary Immunodeficiency Diseases (PID) and Autoinflammatory Disorders (AID), which together make up the majority of Inborn Errors of Immunity (IEI), have resulted in the need for optimisation of transition and transfer of care to adult services. Effective transition is crucial to improve health outcomes and treatment compliance among patients. Evaluations of existing transition programmes in European health centres identified the absence of disease-specific transition guidelines for PID and AID, as a challenge to the transition process. This research aimed to establish expert consensus statements for the transition of young patients with PID and AID to adult services. Methods: This project used the Delphi method to establish mutual agreement for the proposed recommendations. A draft set of statements was developed following a literature review of existing transition programmes. Then the ERN RITA Transition Working Group convened to review the drafted recommendations and develop them into a survey. This survey was circulated among healthcare professionals to determine consensus using a five-point Likert scale, with the level of agreement set to 80% or greater. Statements that did not reach consensus were revised by the Working Group and recirculated among respondents. Results: The initial survey received 93 responses from 68 centres across 23 countries, while the following survey outlining revised recommendations received 66 responses. The respondents agreed upon recommendations detailing the structure and administration of transition programmes, collaborative working with social systems, and contraindications to transfer of care. Conclusion: This paper sets out a comprehensive set of recommendations to optimise transitional care for PID and AID.
Author(s): Israni M, Alderson E, Mahlaoui N, Obici L, Rossi-Semerano L, Lachmann H, Avramovic MZ, Guffroy A, Dalm V, Rimmer R, Solis L, Villar C, Gennery AR, Skeffington S, Nordin J, Warnatz K, Korganow A-S, Anton J, Cattalini M, Berg S, Soler-Palacin P, Campbell M, Burns SO, Neven B, Carrabba M, Pergent M, Jandus P, Velcheva M, Pac M, Haerynck F, Meyts I, Hauck F, Soler-Palacin P, Sediva A, Gardulf A, Hayward G, Amin T, Dehoorne J, Neth O, Masmas TN, Katzenstein T, da Silva SL, Marquart H, Hentgen V, Fabio G, von Bernuth H, Herlin T, Brogan P, Hanitsch L, Santamaria M, Holzinger D, Elcombe S, Wouters C, Luck P, Faust S, Gilliaux O, Goffard J-C, Hague R, Bernatowska E, Mendez-Echevarria A, Jolles S, Lefevre G, Koliou M, Ogunjimi B, Niehues T, Keogan M, Folkers M, Capilna B, Barzaghi F, Fritsch-Stork R, McDermott E, Ludviksson BR, Mogensen TH, Moschese V, Suarez F, Alsina L, Brodszki N, Savic S, Dellepiane RM, Baselli L, Papadopoulou C, Wulffraat N, Arkwright P, Devlin L, Pitsios C, Jesenak M, Kanariou M, Carreras C, Holzer U, Prescott N, Schrijvers R, Canessa C, Seidel M, Kralickova P, Ekwall O, Candotti F, Philippet P, Litzman J, Slatter M, Blattmann C, Naumova E, Tommasini A, Zeuner R, Insalaco A, Solanich X, Seppanen M, Sabato V, Sanchez-Manubens J, Aalto K, Conlan N, Heilmann C, Friman V, Amoura Z, van der Werff ten Bosch J, Kelecic J, Elfeky R, Alataki-Papadopoulou E, Gonzalez-Granado LI
Publication type: Article
Publication status: Published
Journal: Journal of Clinical Immunology
Year: 2025
Volume: 45
Issue: 1
Print publication date: 01/12/2025
Online publication date: 17/12/2024
Acceptance date: 06/11/2024
Date deposited: 08/01/2025
ISSN (print): 0271-9142
ISSN (electronic): 1573-2592
Publisher: Springer
URL: https://doi.org/10.1007/s10875-024-01838-y
DOI: 10.1007/s10875-024-01838-y
Data Access Statement: The data that support the findings of this study are not openly available due to reasons of sensitivity and are available from the corresponding author upon reasonable request. Data are located in controlled access data storage at University College London.
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