中的过渡 - - 一项试点研究,涉及学术中心内外的患者
Quratulain Zulfiqar Ali1, Paula Marques2, Puja Patel3
1Adult Genetic Epilepsy Program, Toronto Western Hospital, Krembil Brain Institute, Toronto, Canada.
Epilepsy & behavior : E&B
|January 14, 2024
概括
患者在过渡到成人护理时面临重大挑战,许多人缺乏适当的指导和支持. 这突显了医疗保健系统在这个关键阶段治疗的关键缺口.
科学领域:
- 神经学 神经学
- 医疗保健系统研究 医疗保健系统研究
- 患者过渡护理 患者过渡护理
背景情况:
- 是一种复杂的神经系统疾病,不仅仅是发作.
- 从儿科到成人医疗保健的过渡给患有的青少年带来了重大挑战.
- 这些挑战在具有同时出现的智力/发育障碍,自闭症谱系障碍或运动障碍的人群中得到了放大.
研究的目的:
- 调查患者及其家属对于从儿科到成人医疗保健的过渡的看法.
- 识别影响过渡过程的知识和系统差距.
主要方法:
- 对患者 (12岁以上) 的患者/护理人员进行了一项调查.
- 参与者通过北美患者支持小组和2019年意识日招募.
- 该调查评估了人口统计数据,病细节,护理质量/获取和过渡准备.
主要成果:
- 没有17岁的孩子报告过关于过渡的讨论.
- 患有和智力/发育障碍的患者的过渡讨论时间较少.
- 与儿科护理相比,在成年人群中报告了获得专科护理的机会显著减少.
- 许多成年患者仍然与家庭医生或儿科神经科医生保持联系,转移说明的清晰度不佳.
结论:
- 对于患者来说,缺乏向成人医疗保健系统 (AHCS) 进行适当的过渡.
- 许多患者被不适当地转移或留在儿科护理下,在AHCS中缺乏必要的社会和医疗支持.
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