儿科生长激素缺乏症患者的旅程:识别数字健康干预的机会
Guido Giunti1,2, Fulvio Michelis3, Ammar Halabi3
1University of Oulu, Oulu, Finland.
Studies in health technology and informatics
|November 22, 2024
概括
针对儿科生长激素缺乏症 (PGHD) 的新患者旅程地图确定了关键挑战. 这张地图为改善PGHD儿童的护理和长期结果提供了见解.
科学领域:
- 儿科内分泌学 儿科内分泌学
- 患者体验研究 研究研究
- 数字健康数字健康
背景情况:
- 儿科生长激素缺乏症 (PGHD) 是一种影响生长和发育的慢性疾病.
- 了解患者的旅程对于识别未满足的需求和改善护理至关重要.
- 目前对于PGHD没有全面的患者旅程地图.
研究的目的:
- 开发儿童生长激素缺乏症 (PGHD) 的第一个详细的患者旅程地图.
- 确定患者和护理人员在整个PGHD旅程中所经历的关键挑战和情绪敏感性.
- 确定针对性干预的机会,以提高护理和改善长期结果.
主要方法:
- 来自五个欧洲国家的62名患者和护理人员的采访和重点小组的二次数据分析.
- 利用一个原型的数字健康解决方案来指导讨论.
- 应用基于理论的数据分析方法.
主要成果:
- 开发了六个阶段的PGHD患者旅程地图:意识,诊断,治疗计划,治疗开始,治疗维护和过渡.
- 在旅程的每个阶段都揭示了特定的情绪敏感性和挑战.
- 突出了潜在的干预领域,以改善患者的坚持和结果.
结论:
- 开发的PGHD患者旅程图为了解患者体验提供了一个新的框架.
- 确定干预的关键点可以带来加强对PGHD的支持和更好的管理.
- 这项研究为医疗保健提供者,政策制定者和数字健康开发者提供了有价值的见解,旨在改善PGHD儿童的护理.
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