Marziniak Martin, Brichetto Giampaolo, Feys Peter, Meyding-Lamadé Uta, Vernon Karen, Meuth Sven G
Department of Neurology, Isar-Amper-Klinikum Munich-East, Haar, Germany.
Scientific Research Area, Italian Multiple Sclerosis Foundation, Genova, Italy.
JMIR Rehabil Assist Technol. 2018 Apr 24;5(1):e5. doi: 10.2196/rehab.7805.
Despite recent advances in multiple sclerosis (MS) care, many patients only infrequently access health care services, or are unable to access them easily, for reasons such as mobility restrictions, travel costs, consultation and treatment time constraints, and a lack of locally available MS expert services. Advances in mobile communications have led to the introduction of electronic health (eHealth) technologies, which are helping to improve both access to and the quality of health care services. As the Internet is now readily accessible through smart mobile devices, most people can take advantage of eHealth apps. The development of digital applications and remote communication technologies for patients with MS has increased rapidly in recent years. These apps are intended to complement traditional in-clinic approaches and can bring significant benefits to both patients with MS and health care providers (HCPs). For patients, such eHealth apps have been shown to improve outcomes and increase access to care, disease information, and support. These apps also help patients to participate actively in self-management, for example, by tracking adherence to treatment, changes in bladder and bowel habits, and activity and mood. For HCPs, MS eHealth solutions can simplify the multidisciplinary approaches needed to tailor MS management strategies to individual patients; facilitate remote monitoring of patient symptoms, adverse events, and outcomes; enable the efficient use of limited resources and clinic time; and potentially allow more timely intervention than is possible with scheduled face-to-face visits. These benefits are important because MS is a long-term, multifaceted chronic condition that requires ongoing monitoring, assessment, and management. We identified in the literature 28 eHealth solutions for patients with MS that fall within the four categories of screening and assessment, disease monitoring and self-management, treatment and rehabilitation, and advice and education. We review each solution, focusing on any clinical evidence supporting their use from prospective trials (including ASSESS MS, Deprexis, MSdialog, and the Multiple Sclerosis Performance Test) and consider the opportunities, barriers to adoption, and potential pitfalls of eHealth technologies in routine health care.
尽管近年来多发性硬化症(MS)的治疗取得了进展,但许多患者因行动不便、交通费用、咨询和治疗时间限制以及当地缺乏MS专家服务等原因,很少或难以获得医疗保健服务。移动通信的发展促使电子健康(eHealth)技术的引入,有助于改善医疗保健服务的可及性和质量。由于现在通过智能移动设备可以轻松访问互联网,大多数人都能利用eHealth应用程序。近年来,针对MS患者的数字应用程序和远程通信技术发展迅速。这些应用旨在补充传统的门诊治疗方法,能给MS患者和医疗保健提供者(HCPs)都带来显著益处。对于患者而言,此类eHealth应用已被证明可改善治疗效果,并增加获得护理、疾病信息和支持的机会。这些应用还帮助患者积极参与自我管理,例如,通过跟踪治疗依从性、膀胱和肠道习惯的变化以及活动和情绪。对于HCPs来说,MS eHealth解决方案可以简化为个体患者量身定制MS管理策略所需的多学科方法;便于远程监测患者症状、不良事件和治疗效果;实现有限资源和门诊时间的高效利用;并且有可能比定期面对面就诊更及时地进行干预。这些益处很重要,因为MS是一种需要持续监测、评估和管理的长期、多方面的慢性病。我们在文献中确定了28种针对MS患者的eHealth解决方案,它们分为筛查与评估、疾病监测与自我管理、治疗与康复以及建议与教育四类。我们对每种解决方案进行综述,重点关注前瞻性试验(包括ASSESS MS、Deprexis、MSdialog和多发性硬化症性能测试)支持其使用的任何临床证据,并考虑eHealth技术在常规医疗保健中的应用机会、采用障碍和潜在陷阱。
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