Research Center for Birth Defects Prevention and Control Technology, Chinese PLA General Hospital, 28 Fu-Xing Road, Beijing 100853, China; Department of Neurology, First Medical Center of Chinese PLA General Hospital, Beijing 100853, China.
Department of Neurology, Third Medical Center of Chinese PLA General Hospital, Beijing 100039, China.
Brain Dev. 2022 Oct;44(9):623-629. doi: 10.1016/j.braindev.2022.05.007. Epub 2022 Jun 9.
The coronavirus disease (COVID-19) pandemic has presented challenges in the care of patients with chronic diseases. We identified the challenges faced by Chinese patients with Duchenne muscular dystrophy (DMD) during the pandemic.
An online cross-sectional survey was conducted between March 27 and June 30, 2021.
Of the 2105 valid questionnaire responses, 2,056 patients were from non-lockdown areas. In these areas, 42.8% reduced outside daily activities, 49.4% reduced rehabilitation service use, 39.7% postponed regular follow-ups, and 40.8% reported accelerated motor function decline. These figures generally increased for patients from lockdown areas-67.3% reduced outside daily activities, 44.9% reduced rehabilitation service use, 79.6% postponed regular follow-ups, and 55.1% reported accelerated motor function decline. Ambulation loss was most commonly reported in September and March before 2020; however, this trend was absent in 2020. Regarding the informed prices of disease-modifying drugs in Europe and the United States, 86.7% could afford a maximum of one-twentieth of the prices, 8.0% could afford one-tenth of the prices, and only 0.6% of the patients could afford the full prices.
Implementation of standardized care for DMD in China is consistent with global practices, and the COVID-19 pandemic has affected the care of patients with chronic diseases worldwide, particularly in lockdown areas. Telemedicine is an effective model for providing healthcare to such patients. Healthcare workers should assist patients and establish more robust chronic disease management systems. Collaboration between governmental and non-governmental entities could address the cost of disease-modifying drugs in China and other developing countries.
冠状病毒病（COVID-19）大流行给慢性病患者的护理带来了挑战。我们确定了大流行期间中国杜氏肌营养不良症（DMD）患者所面临的挑战。
2021 年 3 月 27 日至 6 月 30 日进行了在线横断面调查。
在 2105 份有效问卷答复中，有 2056 名患者来自非封锁区。在这些地区，42.8%减少了户外活动，49.4%减少了康复服务的使用，39.7%推迟了定期随访，40.8%报告运动功能加速下降。这些数字对于来自封锁区的患者而言普遍增加-67.3%减少了户外活动，44.9%减少了康复服务的使用，79.6%推迟了定期随访，55.1%报告运动功能加速下降。在 2020 年之前，9 月和 3 月最常报告丧失行走能力；但是，2020 年没有这种趋势。关于欧洲和美国的疾病修正药物的知情价格，86.7%的患者最多能负担价格的二十分之一，8.0%的患者能负担十分之一的价格，只有 0.6%的患者能负担全价。
中国实施 DMD 的标准化护理与全球实践一致，COVID-19 大流行影响了全球慢性病患者的护理，尤其是在封锁区。远程医疗是为这些患者提供医疗保健的有效模式。医护人员应协助患者并建立更强大的慢性病管理系统。政府和非政府实体之间的合作可以解决中国和其他发展中国家疾病修正药物的费用问题。
