为患有癌症的青少年访问在线患者门户:好处,担忧和挑战
Lauren L Baker1, Sarah E Stevens1, Danielle Cicka1
1Washington University School of Medicine, St. Louis, Missouri, USA.
Pediatric blood & cancer
|January 12, 2026
概括
患有癌症的青少年和家长支持通过患者门户访问电子健康信息 (EHI). 然而,人们对年龄,成熟度以及对青少年心理健康的潜在负面影响存在担忧.
科学领域:
- 青少年瘤学 青少年瘤学
- 医疗信息学 医疗信息学
- 患者参与 患者参与
背景情况:
- 在线患者门户提供电子健康信息 (EHI) 访问.
- 患有癌症的青少年在管理他们的健康信息方面面临着独特的挑战.
研究的目的:
- 确定癌症青少年访问在线患者门户的感知好处,担忧和挑战.
主要方法:
- 定性研究涉及48个青少年-家长对象的半结构面试.
- 对面试成绩单进行主题分析,以探索有关门户访问的经验和担忧.
主要成果:
- 大多数青少年 (85%) 和家长 (87.5%) 赞成青少年EHI访问,取决于年龄和成熟度.
- 虽然大多数家长 (88%) 访问了门户,但只有25%的青少年有.
- 确定的主题:改善沟通,放心,参与,知识,但也导致混乱,担忧和滥用潜力.
结论:
- 患有癌症的青少年和家长支持EHI访问,但在实施方面存在分歧.
- 门户可以缓解和增加有关癌症护理和预后的焦虑.
- 发现了有关青少年心理健康潜在负面影响的新问题.
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