东南亚原发性免疫缺陷疾病的过渡实践:区域调查
Chee Mun Chan1,2, Amir Hamzah Abdul Latiff3, Lokman Mohd Noh4
1Department of Pediatric, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.
在东南亚,将患有原发性免疫缺陷 (PID) 的儿科患者转移到成人护理是具有挑战性的. 许多国家缺乏正式的过渡实践,影响患者的治疗结果.
科学领域:
- 免疫学 免疫学 免疫学
- 医疗保健管理的管理
- 儿科到成人过渡护理
背景情况:
- 儿童原发性免疫缺陷 (PID) 的生存率不断提高,需要转向成人医疗保健系统.
- 目前PID患者的过渡途径定义不佳,导致护理质量下降.
- 这项研究解决了东南亚改善过渡期护理的急需问题.
研究的目的:
- 调查初级免疫缺陷临床医生关于东南亚转型护理实践和挑战的意见.
- 识别PID患者护理过渡的区域差异和障碍.
- 倡导标准化过渡协议,以加强成人PID护理.
主要方法:
- 采用了横截面研究设计.
- 通过在线调查,收集了来自7个东南亚国家的专家代表的数据.
- 调查的重点是当前的过渡实践和感知到的挑战.
主要成果:
- 在七个东南亚国家中,有三个报告说,对于PID没有建立过渡期护理实践.
- 确定的主要挑战包括患者/护理人员适应困难,成年免疫学家比例不足以及转移设施不足.
- 观察到过渡期护理实施的区域差异很大.
结论:
- 这些发现凸显了对东南亚PID患者标准化过渡期护理整合的迫切需要.
- 政策制定者应优先考虑制定和实施结构化过渡计划.
- 改善过渡期护理对于确保PID成年人护理的连续性和质量至关重要.
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