2026-04-17T17:19:58Zhttps://recercat.cat/oai/request

oai:recercat.cat:11351/124892026-03-01T00:51:06Zcom_2072_378070com_2072_378040col_2072_378092

00925njm 22002777a 4500 dc Israni, Muskan author Alderson, Eliska author MAHLAOUI, Nizar author OBICI, Laura Piera author Rossi-Semerano, Linda author Lachmann, Helen author Soler-Palacin, Pere author 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. 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 Recommendations for Transitioning Young People with Primary Immunodeficiency Disorders and Autoinflammatory Diseases to Adult Care