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

Autor: Chan CM; Department of Pediatric, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.; Research Center, Hospital Tunku Ampuan Besar Tuanku Aishah Rohani, Universiti Kebangsaan Malaysia (UKM) Specialist Children's Hospital, Kuala Lumpur, Malaysia., Abdul Latiff AH; Allergy and Immunology Centre, Pantai Hospital, Kuala Lumpur, Malaysia., Noh LM; Malaysian Patient Organization for Primary Immunodeficiencies (MYPOPI), Shah Alam, Selangor, Malaysia., Ismail IH; Clinical Immunology Unit, Department of Paediatrics, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, Serdang, Malaysia., Abd Hamid IJ; Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, Pulau Pinang, Malaysia., Liew WK; Rheumatology and Immunology Service, Department of Pediatric Medicine, KK Women's and Children's Hospital, Singapore, Singapore., Zhong Y; Department of Pediatrics, Yong Loo Lin School of Medicine, Kent Ridge, National University of Singapore, Kent Ridge Country, Singapore., Suratannon N; Center of Excellence for Allergy and Clinical Immunology, Division of Allergy, Immunology and Rheumatology, Department of Pediatrics, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand., Nantanee R; Center of Excellence for Allergy and Clinical Immunology, Division of Allergy, Immunology and Rheumatology, Department of Pediatrics, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand.; King Chulalongkorn Memorial Hospital, The Thai Red Cross Society, Bangkok, Thailand., Santos-Ocampo FJ; Section of Allergy/ Immunology, Department of Pediatrics, Makati Medical Center, Makati, Philippines., Castor MAR; Division of Allergy and Immunology, Department of Pediatrics, College of Medicine - Philippine General Hospital, University of the Philippines Manila, Manila, Philippines., Nguyen-Ngoc-Quynh L; Stem Cells Transplantation Centre, National Children's Hospital, Hanoi, Vietnam., Van Nguyen AT; Allergy - Immunology - Rheumatology Department , National Children's Hospital, Hanoi, Vietnam., Thuc HT; Allergy and Clinical Immunology Center, Vinmec International Hospital, Hanoi, Vietnam., Tuan NM; Department of Paediatrics, Children's Hospital 1, Ho Chi Minh, Vietnam., Muktiarti D; Department of Child Health, Faculty of Medicine, Universitas Indonesia - Cipto Mangunkusumo Hospital, Jakarta, Indonesia., Amalia R; Department of Child Health, Faculty of Medicine, Universitas Indonesia - Cipto Mangunkusumo Hospital, Jakarta, Indonesia., Chean S; Department of Pediatric Hemato-Immunology, National Pediatric Hospital, Phnom Penh, Cambodia., Try L; Department of Pediatric Hemato-Immunology, National Pediatric Hospital, Phnom Penh, Cambodia., Ali A; Department of Pediatric, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.; Research Center, Hospital Tunku Ampuan Besar Tuanku Aishah Rohani, Universiti Kebangsaan Malaysia (UKM) Specialist Children's Hospital, Kuala Lumpur, Malaysia.; Institute of IR4.0, Universiti Kebangsaan Malaysia, Bangi, Malaysia.; Infection and Immunology Health and Advanced Medicine Cluster, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.
Jazyk: angličtina
Zdroj: Frontiers in immunology [Front Immunol] 2023 Jul 13; Vol. 14, pp. 1209315. Date of Electronic Publication: 2023 Jul 13 (Print Publication: 2023).
DOI: 10.3389/fimmu.2023.1209315
Abstrakt: 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.
Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
(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.)
Databáze: MEDLINE