PDF(Pubmed)
Abstract：
The care of cystic fibrosis (CF) traditionally consists of regular visits to the clinic where a multidisciplinary team can visit the patient, adjust treatments and monitor the disease. During the COVID-19 pandemic when access to hospitals and medical environments was very limited, the role of telemedicine was crucial to keep in touch with patients with chronic diseases such as CF. Increasing evidence demonstrates that electronic health can successfully support healthcare professionals in the management of people with CF. The use of devices connected to digital platforms or smartphones results in a continuous flow of data that can be shared with the clinician and the team in order to improve the knowledge of patients\' diseases and the level of care needed. This narrative review aims to describe the application of telemedicine in CF disease with pros and cons. A literature analysis showed that telemedicine has several advantages in the management of patients with CF. With the evolving support of digital technology, telemedicine can promote clinical visits, adherence to daily treatment, including respiratory physiotherapy and physical exercise, early identification of pulmonary exacerbations and management of psychological issues. The main disadvantages are missed physical exam findings, lack of physical contact that can prevent conversation on sensitive topics, lack of access to technology and lack of technological skills. Furthermore, healthcare operators need appropriate training for telemedicine systems and need time to organise and analyse data generated remotely, which may increase the burden of daily work. Hybrid personalised care models that marge telemedicine and traditional care can be an ideal solution.
摘要：
传统上，囊性纤维化（CF）的护理包括定期访问诊所，多学科团队可以访问患者，调整治疗和监测疾病。在COVID-19大流行期间，进入医院和医疗环境非常有限，远程医疗的作用对于与CF等慢性疾病患者保持联系至关重要.越来越多的证据表明，电子健康可以成功地支持医疗保健专业人员管理CF患者。连接到数字平台或智能手机的设备的使用导致连续的数据流，可以与临床医生和团队共享，以提高患者疾病的知识和所需的护理水平。这篇叙述性综述旨在描述远程医疗在CF疾病中的优缺点。文献分析表明，远程医疗在CF患者的管理中具有若干优势。随着数字技术的不断发展，远程医疗可以促进临床就诊，坚持日常治疗，包括呼吸理疗和体育锻炼,早期识别肺加重和处理心理问题。主要缺点是错过了体检结果，缺乏身体接触，可以阻止敏感话题的对话，缺乏技术和技术技能。此外，医疗保健运营商需要对远程医疗系统进行适当的培训，并且需要时间来组织和分析远程生成的数据，这可能会增加日常工作的负担。提供远程医疗和传统护理的混合个性化护理模式可能是理想的解决方案。
