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

Chan CM 1 , Abdul Latiff AH 2 , Noh LM 3 , Ismail IH 4 , Abd Hamid IJ 5 , Liew WK 6 Show all authors , Zhong Y 7 , Suratannon N 8 , Nantanee R 8 , Santos-Ocampo FJ 9 , Castor MAR 10 , Nguyen-Ngoc-Quynh L 11 , Van Nguyen AT 12 , Thuc HT 13 , Tuan NM 14 , Muktiarti D 15 , Amalia R 15 , Chean S 16 , Try L 16 , Ali A 1

Affiliations 

  • 1 Department of Pediatric, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
  • 2 Allergy and Immunology Centre, Pantai Hospital, Kuala Lumpur, Malaysia
  • 3 Malaysian Patient Organization for Primary Immunodeficiencies (MYPOPI), Shah Alam, Selangor, Malaysia
  • 4 Clinical Immunology Unit, Department of Paediatrics, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, Serdang, Malaysia
  • 5 Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, Pulau Pinang, Malaysia
  • 6 Rheumatology and Immunology Service, Department of Pediatric Medicine, KK Women's and Children's Hospital, Singapore, Singapore
  • 7 Department of Pediatrics, Yong Loo Lin School of Medicine, Kent Ridge, National University of Singapore, Kent Ridge Country, Singapore
  • 8 Center of Excellence for Allergy and Clinical Immunology, Division of Allergy, Immunology and Rheumatology, Department of Pediatrics, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand
  • 9 Section of Allergy/ Immunology, Department of Pediatrics, Makati Medical Center, Makati, Philippines
  • 10 Division of Allergy and Immunology, Department of Pediatrics, College of Medicine - Philippine General Hospital, University of the Philippines Manila, Manila, Philippines
  • 11 Stem Cells Transplantation Centre, National Children's Hospital, Hanoi, Vietnam
  • 12 Allergy - Immunology - Rheumatology Department , National Children's Hospital, Hanoi, Vietnam
  • 13 Allergy and Clinical Immunology Center, Vinmec International Hospital, Hanoi, Vietnam
  • 14 Department of Paediatrics, Children's Hospital 1, Ho Chi Minh, Vietnam
  • 15 Department of Child Health, Faculty of Medicine, Universitas Indonesia - Cipto Mangunkusumo Hospital, Jakarta, Indonesia
  • 16 Department of Pediatric Hemato-Immunology, National Pediatric Hospital, Phnom Penh, Cambodia
Front Immunol, 2023;14:1209315.
PMID: 37529038 DOI: 10.3389/fimmu.2023.1209315

Abstract

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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