Sistema de Salut de Catalunya
Institut Català de la Salut
[Israni M, Alderson E] Department of Immunology, Royal Free London NHS Foundation Trust, London, UK. [Mahlaoui N] Pediatric Immuno-Haematology and Rheumatology Unit, Necker Enfants Malades University Hospital, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France. French National Reference Center for Primary Immune Defciencies (CEREDIH), Necker Enfants Malades University Hospital, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France. [Obici L] Fondazione IRCCS Policlinico San Matteo, Centro Per Lo Studio E La Cura Delle Amiloidosi Sistemiche, Pavia, Italy. [Rossi Semerano L] Department of Pediatric Rheumatology, National Reference Centre for Auto-Infammatory Diseases and Amyloidosis of Infammatory Origin (CEREMAIA), Bicêtre Hospital, Assistance Publique-Hôpitaux de Paris (AP-HP), Le Kremlin Bicêtre, France. [Lachmann H] Division of Medicine, National Amyloidosis Centre, University College London, London, UK. [Soler Palacin P] Unitat de Patologia Infecciosa i Immunodeficiències de Pediatria, Vall d’Hebron Hospital Universitari, Barcelona, Spain. Jefrey Modell Diagnostic and Research Center for Primary Immunodefciencies, Barcelona, Spain
Vall d'Hebron Barcelona Hospital Campus
2025-01-27T07:31:27Z
2025-01-27T07:31:27Z
2024-12-17
Transition; Autoinflammatory diseases; Recommendations
Transició; Malalties autoinflamatòries; Recomanacions
Transición; Enfermedades autoinflamatorias; Recomendaciones
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.
This study was supported by the ERN RITA.
Article
Published version
English
Enquestes; Decisió de grup; Continuïtat assistencial; Síndromes de deficiència immunitària - Tractament; Assistència sanitària; Joves adults; ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Surveys and Questionnaires; PSYCHIATRY AND PSYCHOLOGY::Behavior and Behavior Mechanisms::Psychology, Social::Group Processes::Consensus; ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Therapeutics::Patient Care::Continuity of Patient Care::Transition to Adult Care; DISEASES::Immune System Diseases::Immunologic Deficiency Syndromes; Other subheadings::Other subheadings::/therapy; NAMED GROUPS::Persons::Age Groups::Adult::Young Adult; TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::técnicas de investigación::métodos epidemiológicos::recopilación de datos::encuestas y cuestionarios; PSIQUIATRÍA Y PSICOLOGÍA::conducta y mecanismos de la conducta::psicología social::procesos de grupo::consenso; TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::terapéutica::asistencia al paciente::continuidad de la atención al paciente::tránsito a la atención adulta; ENFERMEDADES::enfermedades del sistema inmune::síndromes de inmunodeficiencia; Otros calificadores::Otros calificadores::/terapia; DENOMINACIONES DE GRUPOS::personas::Grupos de Edad::adulto::adulto joven
Springer
Journal of Clinical Immunology;45
https://doi.org/10.1007/s10875-024-01838-y
Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
Articles científics - HVH [3440]
