背景:冠状病毒病(COVID-19)大流行给慢性病患者的护理带来了挑战。我们确定了中国Duchenne型肌营养不良(DMD)患者在大流行期间面临的挑战。
方法:在2021年3月27日至6月30日之间进行了在线横断面调查。
结果:在2105份有效问卷答复中,2,056名患者来自非封锁地区。在这些地区,外部日常活动减少42.8%,康复服务使用量减少49.4%,39.7%推迟定期随访,和40.8%报告加速运动功能下降。来自封锁区的患者的这些数字普遍增加-日常活动外减少了67.3%,康复服务使用量减少44.9%,79.6%推迟定期随访,55.1%的人报告运动功能加速下降。步行损失最常见于2020年之前的9月和3月;然而,这一趋势在2020年没有出现。关于欧洲和美国的疾病改善药物的知情价格,86.7%的人最多可以负担得起二十分之一的价格,8.0%的人可以负担得起十分之一的价格,只有0.6%的病人能负担得起全价。
结论:在中国实施DMD标准化护理与全球实践一致,COVID-19大流行影响了全世界慢性病患者的护理,特别是在封锁地区。远程医疗是为此类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。政府实体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改善疾病药物的成本问题。
BACKGROUND: 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.
METHODS: An online cross-sectional survey was conducted between March 27 and June 30, 2021.
RESULTS: 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.
CONCLUSIONS: 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.