对患者和家长与未诊断疾病项目经验的定性评估
Dorothea Siebold1, Jessica Denton1, Anna C E Hurst2
1University of Alabama (UAB), School of Health Professions, Birmingham, Alabama, USA.
患者在评估后重视未诊断疾病计划 (UDP),但存在未满足的后续需求. 诊断结果显著塑造了患者的体验,突出了方案改进的领域.
科学领域:
- 医学遗传学 医学遗传学
- 罕见疾病 罕见疾病
- 以患者为中心的护理
背景情况:
- 以前的研究集中在未诊断疾病计划 (UDP) 中的预评估患者经验上.
- 了解评估后的经验对于完善当前实践和解决患者/家长需求至关重要.
- 罕见疾病的诊断旅程往往会让患者和家人寻求答案.
研究的目的:
- 在参加临床专注的未诊断疾病计划 (UDP) 后,探索患者和家长的经验.
- 根据患者的定性反,确定UDP的优点和改进领域.
- 为开发和优化用于未诊断和罕见疾病的类似诊所提供见解.
主要方法:
- 使用半结构面试与患者和家长进行的定性研究.
- 主题分析指导了采访数据的解释.
- 专注于阿拉巴马大学伯明翰 (UAB) 未诊断疾病计划 (UDP) 的经验.
主要成果:
- 经历了诊断旅程的参与者表达了希望,并赞赏UDP的评估.
- 对UDP体验的看法因是否确立了诊断而有所不同.
- 最初的沟通得到了积极的接收,但后续的沟通显示了未得到满足的需求.
结论:
- 患者和家长将UDP视为实现诊断的主要途径.
- UAB UDP 显示出优势,但需要对后续护理进行改进,以优化患者的益处.
- 这些发现为提高UDP和类似罕见病诊所提供的护理提供了宝贵的见解.
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