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

被引：5

作者：

Chan, Chee Mun ^{[1
,2
]}

Abdul Latiff, Amir Hamzah ^{[3
]}

Noh, Lokman Mohd ^{[4
]}

Ismail, Intan Hakimah ^{[5
]}

Abd Hamid, Intan Juliana ^{[6
]}

Liew, Woei Kang ^{[7
]}

Zhong, Youjia ^{[8
]}

Suratannon, Narissara ^{[9
]}

Nantanee, Rapisa ^{[9
,10
]}

Santos-Ocampo, Fatima Johanna ^{[11
]}

Castor, Mary Anne R. ^{[12
]}

Nguyen-Ngoc-Quynh, Le ^{[13
]}

Van Nguyen, Anh Thi ^{[14
]}

Thuc, Huyen Thanh ^{[15
]}

Tuan, Nguyen Minh ^{[16
]}

Muktiarti, Dina ^{[17
]}

Amalia, Rizqi ^{[17
]}

Chean, Sophal ^{[18
]}

Try, Lytheang ^{[18
]}

Ali, Adli ^{[1
,2
,19
,20
]}

机构：

[1] Univ Kebangsaan Malaysia, Fac Med, Dept Pediat, Kuala Lumpur, Malaysia

[2] Univ Kebangsaan Malaysia UKM, Hosp Tunku Ampuan Besar Tuanku Aishah Rohani, Res Ctr, Specialist Childrens Hosp, Kuala Lumpur, Malaysia

[3] Pantai Hosp, Allergy & Immunol Ctr, Kuala Lumpur, Malaysia

[4] Malaysian Patient Org Primary Immunodeficiencies, Shah Alam, Selangor, Malaysia

[5] Univ Putra Malaysia, Fac Med & Hlth Sci, Dept Paediat, Clin Immunol Unit, Serdang, Malaysia

[6] Univ Sains Malaysia, Inst Perubatan & Pergigian Termaju, Dept Clin Med, Primary Immunodeficiency Dis Grp, Kepala Batas, Pulau Pinang, Malaysia

[7] KK Womens & Childrens Hosp, Dept Pediat Med, Rheumatol & Immunol Serv, Singapore, Singapore

[8] Natl Univ Singapore, Yong Loo Lin Sch Med, Dept Pediat, Singapore, Kent Ridge, Singapore

[9] Chulalongkorn Univ, Fac Med, Ctr Excellence Allergy & Clin Immunol, Div Allergy Immunol & Rheumatol,Dept Pediat, Bangkok, Thailand

[10] King Chulalongkorn Mem Hosp, Thai Red Cross Soc, Bangkok, Thailand

[11] Makati Med Ctr, Dept Pediat, Sect Allergy Immunol, Makati, Philippines

[12] Univ Philippines Manila, Philippine Gen Hosp, Coll Med, Div Allergy & Immunol,Dept Pediat, Manila, Philippines

[13] Natl Childrens Hosp, Stem Cells Transplantat Ctr, Hanoi, Vietnam

[14] Natl Childrens Hosp, Allergy Immunol Rheumatol Dept, Hanoi, Vietnam

[15] Vinmec Int Hosp, Allergy & Clin Immunol Ctr, Hanoi, Vietnam

[16] Childrens Hosp 1, Dept Paediat, Ho Chi Minh, Vietnam

[17] Univ Indonesia, Cipto Mangunkusumo Hosp, Fac Med, Dept Child Hlth, Jakarta, Indonesia

[18] Natl Pediat Hosp, Dept Pediat Hematoimmunol, Phnom Penh, Cambodia

[19] Univ Kebangsaan Malaysia, Inst IR4 0, Bangi, Malaysia

[20] Univ Kebangsaan Malaysia, Infect & Immunol Hlth & Adv Med Cluster, Kuala Lumpur, Malaysia

来源：

FRONTIERS IN IMMUNOLOGY | 2023年 / 14卷

关键词：

primary immunodeficiencies; transition practice; challenges; opinion; Southeast Asia (SEA); CARE; ADULTS; PIDS;

D O I：

10.3389/fimmu.2023.1209315

中图分类号：

R392 [医学免疫学]; Q939.91 [免疫学];

学科分类号：

100102 ;

摘要：

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.

引用

页数：11

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