探索遗传咨询师对患有神经发育疾病的儿科患者过渡期护理讨论的兴趣和作用
Molly Lombard1,2, Leah Wetherill1, Jennifer Ivanovich1,2
1Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, Indiana, USA.
Journal of genetic counseling
|November 14, 2024
概括
遗传咨询师 (GC) 有兴趣在过渡到成人护理期间帮助患有神经发育疾病 (NDC) 的儿科患者. 整合GC专业知识可以增强这一关键过程,并与儿科护理标准保持一致.
科学领域:
- 医学遗传学 医学遗传学
- 儿科医疗保健 儿科医疗保健
- 关怀的过渡 关怀的过渡
背景情况:
- 之前的研究重点是医疗保健提供者在患有神经发育疾病 (NDC) 的儿科患者过渡中的作用.
- 遗传咨询师 (GC) 在这种过渡过程中的具体观点和参与仍然未得到充分探索.
研究的目的:
- 调查遗传咨询师 (GC) 关于NDC儿科患者医疗过渡的当前做法,态度和感知障碍.
- 评估GC对管理NDC患者护理过渡的兴趣和信心.
主要方法:
- 对51名遗传咨询师 (GC) 进行了一项横截面在线调查,他们正在积极看待NDC患者.
- 调查问题涵盖了人口统计数据,目前的儿科与年轻成人患者的做法,自信,态度和与过渡过程相关的障碍.
主要成果:
- 显著的大多数GC (76.7%) 表示有兴趣参与过渡进程.
- 所有接受调查的医疗顾问都认为,为患有NDC的儿科遗传患者进行过渡规划是很重要的.
- 大多数GC (70.0%) 报告与16-22岁的患者讨论过渡主题.
结论:
- 遗传咨询师表现出强烈的兴趣,支持患者和家庭通过从儿科到成人护理的过渡.
- 将遗传咨询专业知识纳入NDC患者的过渡规划中,有可能改善护理结果.
- 这种整合可能有助于满足美国儿科学会等组织推的不断变化的护理标准.
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