Transition of care in inborn errors of immunity

被引:3
|
作者
Tadros, Susan [1 ,2 ]
Burns, Siobhan O. [1 ,2 ]
机构
[1] Royal Free London NHS Fdn Trust, Dept Immunol, Pond St, London NW3 2QG, England
[2] UCL, Inst Immun & Transplantat, London, England
关键词
inborn errors of immunity; primary immunodeficiency; transition; ADULT CARE; DISEASE; ONSET; READINESS; OUTCOMES; TRAQ;
D O I
10.1097/ACI.0000000000000948
中图分类号
R392 [医学免疫学];
学科分类号
100102 ;
摘要
Purpose of review This review outlines the principles of transition, summarizes current information about transition practices in inborn errors of immunity (IEI) and highlights general and specific considerations for transition of patients with these conditions. Recent findings Recent surveys demonstrate the variability in access to and transition practices in IEI. Key challenges of transition in IEI from the perspective of healthcare professionals include lack of adult subspecialists, lack of access to holistic care and fragmentation of adult services. Limited research focused on IEI patient and carer perspectives highlight information gaps, poor coordination and difficulty adapting to adult healthcare structures as important challenges for smooth transition. Summary Local policies and practices for transition in IEI are highly variable with limited assessment of outcomes or patient experience. There is a need for IEI-focused transition research and for development of national and international consensus statements to guide improved transition in IEI.
引用
收藏
页码:455 / 460
页数:6
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