@文章{info:doi/10.2196/12340，作者=“钱文吉、林文吉、林泰宁、李汉伟、李志光和张、尹婷”，标题=“改善血友病患者自我管理的远程健康干预:临床研究的范围综述”，期刊=“J Med Internet Res”，年=“2019”，月=“7”，日=“10”，卷=“21”，号=“7”，页=“e12340”，关键词=“血友病;凝血因子;依从性;自我管理;背景:血友病家庭治疗的引入使患者及其家属能够更独立地管理疾病。然而，血友病的自我管理是严格和复杂的。通过远程保健途径(如社交媒体和基于网络的和移动应用程序)提供的创新干预措施的使用，可能有助于监测出血事件，并促进血友病患者适当使用凝血因子。目的:本综述旨在总结评估远程卫生干预在改善血友病患者健康结果方面的有效性的文献，并为未来的研究提供方向。方法:在Ovid MEDLINE、EMBASE和PubMed数据库中搜索:(1)专注于血友病A或B患者的研究;(2)测试通过互联网、无线、卫星、电话和移动电话媒体对患者和护理人员使用远程远程卫生干预措施的情况; and (3) reported on at least one of the following patient-/caregiver-focused outcomes related to empowering patients/caregivers to be active decision makers in the emotional, social, and medical management of the illness: quality of life, monitoring of bleeding episodes, joint damage or other measures of functional status, medication adherence, and patients' knowledge. Implementation outcomes (user metrics, cost saving, and accuracy of electronic records) were also evaluated. Reviews, commentaries, and case reports comprising ≤10 cases were excluded. Results: Sixteen articles fulfilled the inclusion criteria. The majority of the interventions (10/16, 62{\%}) evaluated both implementation outcomes and patient-/caregiver-focused outcomes. User performance and accuracy and comprehensiveness of electronic records were also measured in most studies (4/16, 87{\%}). The components of the interventions were rather homogenous and typically involved electronic logging and reminders for prophylactic infusions, reporting of spontaneous and traumatic bleeding events, monitoring of infusion product usage and home inventory, and real-time communication with health care professionals and hemophilia clinics. Telemedicine-supported education and information interventions seemed to be particularly effective among adolescent and young adult patients. Although the patients reported improvements in their health-related quality of life and perception of illness, telemonitoring devices did not appear to have a significant effect on quantifiable health outcomes such as joint health. Longitudinal studies seemed to suggest that the response and adherence rates to recording decreased over time. Conclusions: Preliminary evidence from this review suggests that telehealth-delivered interventions could feasibly improve patients' adherence to medication use and promote independence in disease management. Given the complexity and resources involved in developing a mature and established system, support from a dedicated network of hemophilia specialists and data managers will be required to maintain the technology, improve adherence to prophylactic treatment and recording, and validate the electronic data locally. ", issn="1438-8871", doi="10.2196/12340", url="//www.mybigtv.com/2019/7/e12340/", url="https://doi.org/10.2196/12340", url="http://www.ncbi.nlm.nih.gov/pubmed/31293241" }