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.
Front Immunol. 2023 Jul 13;14:1209315. doi: 10.3389/fimmu.2023.1209315. eCollection 2023.
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.
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.
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.
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.
随着原发性免疫缺陷病(PID)诊断能力和治疗方式的提高,许多儿科患者能够存活至成年,并需要向成人为主的医疗保健系统转变。不幸的是,PID 的过渡途径不够明确,导致成年期的医疗质量下降。因此,这是第一项针对东南亚(SEA)7 个国家 PID 临床医生对过渡护理实践和挑战的意见的区域研究。
我们通过在线调查平台采用横断面研究设计,询问 7 个 SEA 国家的专家代表对过渡护理实践的意见。
7 个国家中有 3 个国家报告称没有过渡护理实践。被引用的挑战包括患者和护理人员不愿意适应不熟悉的成人医疗保健系统、成人免疫学家与患者的比例不足以及缺乏转介设施。
我们的研究为政策制定者提供了证据,强调了标准化过渡实践的重要性,以改善过渡到成年期的 PID 患者的状况。