Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey

Abstract

IntroductionWith increased diagnostic capabilities and treatment modalities in the field of primary immunodeficiencies (PID), many pediatric patients survive beyond childhood and experience a change of care to the adult-oriented healthcare system. Unfortunately, the transition pathways for PID are less clearly defined, resulting in deterioration of quality of care in adulthood. Hence, this is the first regional study to address PID clinicians’ opinions on practices and challenges of transition care in 7 Southeast Asia (SEA) countries.MethodsWe adopted a cross-sectional study design through an online survey platform to enquire opinions of transition practices from expert representatives in 7 SEA countries.ResultsRegionally, 3 out 7 countries reported having no practice of transition care. Among cited challenges were reluctant adaptation by patients and caregivers to unfamiliarized adult healthcare systems, inadequate ratio of adult immunologists to patients and lack of facilities for transfer.Discussion and conclusionOur study provides evidence to advocate policy makers on the importance of standardized integration of transition practice towards betterment of transiting PID patients into adulthood.

Transition of care in inborn errors of immunity

“…This likely reflects the fact that the majority of responding paediatric centres were relatively large (caring for >100 patients with PID) with access to specialist adult centres, which may not be generalizable across Europe. In contrast, a South East Asia Primary Immunodeficiencies (SEAPID) consortium survey of paediatric centres caring for patients with PID in 7 countries across South East Asia found that 3/7 countries reported no practice of transition care with paediatricians continuing to be the primary provider of care for in some countries [ 21 ▪▪ ]. In North America, a survey of allergists and immunologists among members of the American Academy of Allergy Asthma and Immunology (AAAAI) and Clinical Immunology Society (CIS), highlighted that over half of clinicians caring for patients with PID transitioned their own paediatric patients and retained care of their adult PID patients, reflecting that the majority of respondents combined had subspecialty training encompassing both paediatric and adult Allergy and Immunology [ 22 ▪▪ ].…”

“…Despite variability in access to and practice of transition seen in these three surveys, similarities emerged regarding current difficulties in transition practice for IEI across all regions. Common themes included fragmentation of adult services, lack of adult subspecialists, reluctance of patients and their care givers to transfer from their paediatrician, poor engagement with health professionals, lack of holistic care at both paediatric and adult centres to support patients and their families and lack of time and resource to prepare transition documentation [ 7 ▪ , 21 ▪▪ , 22 ▪▪ ]. Formal local policies were variably in place and lack of national/international consensus statements or guidelines for transition of primary immunodeficiency patients was cited by all surveys as a gap.…”

Paving the way in implementation of SCID newborn screening in developing nations: feasibility study and strategies to move forward in Malaysia

“…The limited availability of comprehensive epidemiological data on PIDs, coupled with a lack of patient awareness and diagnostic facilities, poses a substantial hurdle for the healthcare community. Additionally, the field of clinical immunology is considered novel and it is not recognized as a subspecialty in Malaysia yet, contributing to insufficient immunologists in practice ( 5 , 6 ). Given there is a lack of immunologists in providing the standard of care for PID patients, they face the risk of being misdiagnosed or undiagnosed ( 7 ).…”