设计,开发和可用性测试一个eHealth计划的青少年与骨质发育不完美:为一个2阶段的用户中心混合方法研究的协议
Argerie Tsimicalis1, Jennifer Stinson2, Kelly Thorstad1
1Shriners Hospitals for Children-Canada, Montreal, QC, Canada.
JMIR research protocols
|June 23, 2023
概括
这项研究开发了"Teens OI",这是一项电子健康计划,旨在帮助患有骨质发育不完善 (OI) 的年轻人管理他们的病情并过渡到成人护理. 它优先考虑心理健康,疼痛和可访问性,旨在改善生活质量.
科学领域:
- 医疗信息学 医疗信息学
- 数字健康数字健康
- 患者自我管理
背景情况:
- 骨质发生不完美症 (OI) 需要创新的自我管理策略,为青少年过渡到成人医疗保健.
- 现有的医疗保健系统在关键的过渡阶段往往没有为患有OI的年轻人提供量身定制的支持.
- 电子健康计划可以弥合这一差距,优化自我管理,提高OI年轻人的护理质量.
研究的目的:
- 设计和开发一个电子健康计划,
- 青少年接管:在线管理OI
- (青少年OI),在英语和法语版本.
- 评估青少年IO程序的可用性,评估青少年IO及其家长之间的效率,有效性和用户满意度.
主要方法:
- 一个以用户为中心的设计方法被用来开发青少年的OI程序.
- 一个网站设计和开发委员会,包括OI和父母的年轻人,指导该计划的创建.
- 可用性测试将在四个代周期中进行,使用青少年-家长二元组,使用描述性统计和内容分析分析数据.
主要成果:
- 成立了一个跨学科委员会,包括医疗保健专业人员,患有OI的青少年和家长,以指导发展.
- 采访的初步分析突出了优先考虑的关键领域:心理健康,疼痛管理,可访问性,医疗保健,教育,社区融合和家长支持.
- 内容开发即将完成,可用性测试得到了伦理认可,并将开始.
结论:
- 青少年OI计划与患者和专业人士共同设计,旨在赋予OI年轻人管理他们的终身状况的权力.
- 通过利用电子健康技术,该计划预计将增强自我管理技能,并促进更顺利地过渡到成人医疗保健.
- 这个倡议解决了关键的护理质量差距,减轻了与OI人口过渡相关的风险.
关键词:
电子健康计划 电子健康计划骨质发生不完美 (osteogenesis imperfecta) 是一个不完美的疾病.自己管理的自我管理.关怀的过渡 关怀的过渡年轻人年轻人年轻人年轻人年轻人年轻人更多相关视频
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