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

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

Introduction: With 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...

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Main Authors:	Chan, Chee Mun, Abdul Latiff, Amir Hamzah, Noh, Lokman Mohd, Ismail, Intan Hakimah, Abd Hamid, Intan Juliana, Liew, Woei Kang, Zhong, Youjia, Suratannon, Narissara, Nantanee, Rapisa, Santos-Ocampo, Fatima Johanna, Castor, Mary Anne R., Nguyen-Ngoc-Quynh, Le, Van Nguyen, Anh Thi, Thuc, Huyen Thanh, Tuan, Nguyen Minh, Muktiarti, Dina, Amalia, Rizqi, Chean, Sophâl, Try, Lytheang, Ali, Adli
Format:	Article
Language:	English
Published:	Frontiers Media SA 2023
Online Access:	http://psasir.upm.edu.my/id/eprint/108340/1/108340.pdf http://psasir.upm.edu.my/id/eprint/108340/ https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1209315/full
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spelling	my.upm.eprints.1083402024-10-14T07:11:27Z http://psasir.upm.edu.my/id/eprint/108340/ Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey Chan, Chee Mun Abdul Latiff, Amir Hamzah Noh, Lokman Mohd Ismail, Intan Hakimah Abd Hamid, Intan Juliana Liew, Woei Kang Zhong, Youjia Suratannon, Narissara Nantanee, Rapisa Santos-Ocampo, Fatima Johanna Castor, Mary Anne R. Nguyen-Ngoc-Quynh, Le Van Nguyen, Anh Thi Thuc, Huyen Thanh Tuan, Nguyen Minh Muktiarti, Dina Amalia, Rizqi Chean, Sophâl Try, Lytheang Ali, Adli Introduction: With 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. Methods: We adopted a cross-sectional study design through an online survey platform to enquire opinions of transition practices from expert representatives in 7 SEA countries. Results: Regionally, 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 conclusion: Our study provides evidence to advocate policy makers on the importance of standardized integration of transition practice towards betterment of transiting PID patients into adulthood. Frontiers Media SA 2023-07 Article PeerReviewed text en cc_by_4 http://psasir.upm.edu.my/id/eprint/108340/1/108340.pdf Chan, Chee Mun and Abdul Latiff, Amir Hamzah and Noh, Lokman Mohd and Ismail, Intan Hakimah and Abd Hamid, Intan Juliana and Liew, Woei Kang and Zhong, Youjia and Suratannon, Narissara and Nantanee, Rapisa and Santos-Ocampo, Fatima Johanna and Castor, Mary Anne R. and Nguyen-Ngoc-Quynh, Le and Van Nguyen, Anh Thi and Thuc, Huyen Thanh and Tuan, Nguyen Minh and Muktiarti, Dina and Amalia, Rizqi and Chean, Sophâl and Try, Lytheang and Ali, Adli (2023) Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey. Frontiers in Immunology, 14. pp. 1-10. ISSN 1664-3224 https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1209315/full 10.3389/fimmu.2023.1209315
institution	Universiti Putra Malaysia
building	UPM Library
collection	Institutional Repository
continent	Asia
country	Malaysia
content_provider	Universiti Putra Malaysia
content_source	UPM Institutional Repository
url_provider	http://psasir.upm.edu.my/
language	English
description	Introduction: With 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. Methods: We adopted a cross-sectional study design through an online survey platform to enquire opinions of transition practices from expert representatives in 7 SEA countries. Results: Regionally, 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 conclusion: Our study provides evidence to advocate policy makers on the importance of standardized integration of transition practice towards betterment of transiting PID patients into adulthood.
format	Article
author	Chan, Chee Mun Abdul Latiff, Amir Hamzah Noh, Lokman Mohd Ismail, Intan Hakimah Abd Hamid, Intan Juliana Liew, Woei Kang Zhong, Youjia Suratannon, Narissara Nantanee, Rapisa Santos-Ocampo, Fatima Johanna Castor, Mary Anne R. Nguyen-Ngoc-Quynh, Le Van Nguyen, Anh Thi Thuc, Huyen Thanh Tuan, Nguyen Minh Muktiarti, Dina Amalia, Rizqi Chean, Sophâl Try, Lytheang Ali, Adli
spellingShingle	Chan, Chee Mun Abdul Latiff, Amir Hamzah Noh, Lokman Mohd Ismail, Intan Hakimah Abd Hamid, Intan Juliana Liew, Woei Kang Zhong, Youjia Suratannon, Narissara Nantanee, Rapisa Santos-Ocampo, Fatima Johanna Castor, Mary Anne R. Nguyen-Ngoc-Quynh, Le Van Nguyen, Anh Thi Thuc, Huyen Thanh Tuan, Nguyen Minh Muktiarti, Dina Amalia, Rizqi Chean, Sophâl Try, Lytheang Ali, Adli Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey
author_facet	Chan, Chee Mun Abdul Latiff, Amir Hamzah Noh, Lokman Mohd Ismail, Intan Hakimah Abd Hamid, Intan Juliana Liew, Woei Kang Zhong, Youjia Suratannon, Narissara Nantanee, Rapisa Santos-Ocampo, Fatima Johanna Castor, Mary Anne R. Nguyen-Ngoc-Quynh, Le Van Nguyen, Anh Thi Thuc, Huyen Thanh Tuan, Nguyen Minh Muktiarti, Dina Amalia, Rizqi Chean, Sophâl Try, Lytheang Ali, Adli
author_sort	Chan, Chee Mun
title	Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey
title_short	Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey
title_full	Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey
title_fullStr	Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey
title_full_unstemmed	Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey
title_sort	transition practice for primary immunodeficiency diseases in southeast asia: a regional survey
publisher	Frontiers Media SA
publishDate	2023
url	http://psasir.upm.edu.my/id/eprint/108340/1/108340.pdf http://psasir.upm.edu.my/id/eprint/108340/ https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1209315/full
_version_	1814054653690642432
score	13.211869

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

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