TY - JOUR
T1 - Transition practice for primary immunodeficiency diseases in Southeast Asia
T2 - a regional survey
AU - the South East Asia Primary Immunodeficiencies (SEAPID) Consortium
AU - Chan, Chee Mun
AU - Abdul Latiff, Amir Hamzah
AU - Noh, Lokman Mohd
AU - Ismail, Intan Hakimah
AU - Abd Hamid, Intan Juliana
AU - Liew, Woei Kang
AU - Zhong, Youjia
AU - Suratannon, Narissara
AU - Nantanee, Rapisa
AU - Santos-Ocampo, Fatima Johanna
AU - Castor, Mary Anne R.
AU - Nguyen-Ngoc-Quynh, Le
AU - Van Nguyen, Anh Thi
AU - Thuc, Huyen Thanh
AU - Tuan, Nguyen Minh
AU - Muktiarti, Dina
AU - Amalia, Rizky
AU - Chean, Sophâl
AU - Try, Lytheang
AU - Ali, Adli
N1 - Funding Information:
The publication fee is sponsored by the Faculty of Medicine, The National University of Malaysia (UKM) under UKM Fundamental Research Grant UKM PPI/111/8/JEP-2023-120. Acknowledgments
Funding Information:
This study was approved and supported by the Secretariat of Research and Innovation Universiti Kebangsaan Malaysia (UKM) (Project code: UKM PPI/111/8/JEP-2023-120). The study was conducted in full compliance with ethical principles outlined in the Declaration of Helsinki and Malaysian Good Clinical Practice Guideline.
Publisher Copyright:
Copyright © 2023 Chan, Abdul Latiff, Noh, Ismail, Abd Hamid, Liew, Zhong, Suratannon, Nantanee, Santos-Ocampo, Castor, Nguyen-Ngoc-Quynh, Van Nguyen, Thuc, Tuan, Muktiarti, Amalia, Chean, Try and Ali.
PY - 2023
Y1 - 2023
N2 - 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.
AB - 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.
KW - challenges
KW - opinion
KW - primary immunodeficiencies
KW - Southeast Asia (SEA)
KW - transition practice
UR - http://www.scopus.com/inward/record.url?scp=85166037590&partnerID=8YFLogxK
U2 - 10.3389/fimmu.2023.1209315
DO - 10.3389/fimmu.2023.1209315
M3 - Article
C2 - 37529038
AN - SCOPUS:85166037590
SN - 1664-3224
VL - 14
JO - Frontiers in Immunology
JF - Frontiers in Immunology
M1 - 1209315
ER -