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

Area of Science:

• Immunology
• Healthcare Management
• Pediatric to Adult Transition Care

Background:

• Increasing survival rates in pediatric primary immunodeficiencies (PID) necessitate a shift to adult healthcare systems.
• Current transition pathways for PID patients are poorly defined, leading to a decline in care quality.
• This study addresses the critical need for improved transition care in Southeast Asia.

Purpose of the Study:

• To investigate the opinions of primary immunodeficiency clinicians on transition care practices and challenges in Southeast Asia.
• To identify regional disparities and barriers in the transition of care for PID patients.
• To advocate for standardized transition protocols to enhance adult PID care.

Main Methods:

• A cross-sectional study design was employed.
• An online survey was used to gather data from expert representatives across 7 Southeast Asian countries.
• The survey focused on current transition practices and perceived challenges.

Main Results:

• Three out of seven Southeast Asian countries reported no established transition care practices for PID.
• Key challenges identified include patient/caregiver adaptation difficulties, insufficient adult immunologist ratios, and inadequate transfer facilities.
• Significant regional variations in transition care implementation were observed.

Conclusions:

• The findings highlight the urgent need for standardized transition care integration for PID patients in Southeast Asia.
• Policy makers should prioritize the development and implementation of structured transition programs.
• Improving transition care is crucial for ensuring continuity and quality of care for adults with PID.