Current Transition Practice for Primary Immunodeficiencies and Autoinflammatory Diseases in Europe : a RITA-ERN Survey
Israni, Muskan (Royal Free London NHS Foundation Trust)
Nicholson, Bethany (Royal Free London NHS Foundation Trust)
Mahlaoui, Nizar (Necker Enfants Malades University Hospital)
Obici, Laura (Fondazione IRCCS Policlinico San Matteo)
Rossi-Semerano, Linda (Assistance Publique-Hôpitaux de Paris (AP-HP))
Lachmann, Helen (University College London)
Hayward, Georgia (Chapel Allerton Hospital)
Avramovič, Mojca Zajc (University Children's Hospital Ljubljana)
Guffroy, Aurelien (Université de Strasbourg)
Dalm, Virgil (Erasmus University Medical Center)
Rimmer, Rachel (Rare Autoinflammatory Conditions Community - UK)
Solis, Leire (International Patient Organisation for Primary Immunodeficiencies (IPOPI))
Villar, Carlotta (Barcelona PID Foundation)
Gennery, Andrew R. (Newcastle University)
Skeffington, Stephanie (Irish Vasculitis Organisation)
Nordin, Julia (International Patient Organisation for Primary Immunodeficiencies (IPOPI))
Warnatz, Klaus (University of Freiburg)
Korganow, Anne-Sophie (Université de Strasbourg)
Antón, Jordi (Hospital Sant Joan de Déu (Barcelona, Catalunya))
Cattalini, Marco (University of Brescia)
Amin, Tania (Leeds Children's Hospital)
Berg, Stephan (Queen Silvia Children's Hospital)
Soler-Palacín, Pere (Hospital Universitari Vall d'Hebron)
Burns, Siobhan (University College London Institute of Immunity and Transplantation)
Campbell, Mari (University College London Institute of Immunity and Transplantation)
Universitat Autònoma de Barcelona

Data:	2022
Resum:	Due to the absence of curative treatments for inborn errors of immunity (IEI), children born with IEI require long-term follow-up for disease manifestations and related complications that occur over the lifespan. Effective transition from pediatric to adult services is known to significantly improve adherence to treatment and long-term outcomes. It is currently not known what transition services are available for young people with IEI in Europe. To understand the prevalence and practice of transition services in Europe for young people with IEI, encompassing both primary immunodeficiencies (PID) and systemic autoinflammatory disorders (AID). A survey was generated by the European Reference Network on immunodeficiency, autoinflammatory, and autoimmune diseases Transition Working Group and electronically circulated, through professional networks, to pediatric centers across Europe looking after children with IEI. Seventy-six responses were received from 52 centers, in 45 cities across 17 different countries. All services transitioned patients to adult services, mainly to specialist PID or AID centers, typically transferring up to ten patients to adult care each year. The transition process started at a median age of 16-18 years with transfer to the adult center occurring at a median age of 18-20 years. 75% of PID and 68% of AID centers held at least one joint appointment with pediatric and adult services prior to the transfer of care. Approximately 75% of PID and AID services reported having a defined transition process, but few centers reported national disease-specific transition guidelines to refer to. Transition services for children with IEI in Europe are available in many countries but lack standardized guidelines to promote best practice. The online version contains supplementary material available at 10. 1007/s10875-022-01345-y.
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	Transition ; Primary immunodeficiencies ; Autoinflammatory diseases ; Network
Publicat a:	Journal of Clinical Immunology, Vol. 43 (october 2022) , p. 206-216, ISSN 1573-2592

DOI: 10.1007/s10875-022-01345-y
PMID: 36222999

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