PDF(Sci-hub)
Abstract：
In this study, we examined the social and health impacts of the coronavirus disease 2019 (COVID-19) pandemic and social guidelines on people with muscular dystrophies.
A prospective de-identified electronic survey was distributed to adults with self-reported facioscapulohumeral muscular dystrophy (FSHD), myotonic dystrophy (DM), and limb-girdle muscular dystrophy (LGMD) enrolled in national registries or with patient advocacy groups. The COVID-19 Impact Survey was developed by muscular dystrophy experts in association with patient collaborators and advocacy groups. The Perceived Stress Scale was used to measure perceived stress.
Respondents (n = 774: 56% FSHD; 35% DM, and 9% LGMD) were mostly women and middle-aged (range 19-87 y). Rates of COVID-19 infections were low (<1%), compliance with local social distancing guidelines and policies high (98%). Major challenges reported during the pandemic included: obtaining treatment (40%), managing stress (37%), social distancing (36%), and obtaining essentials (34%). The majority reported a slight worsening in their disease state. Respondents reported moderate stress levels (stress score = 15.4; range = 0-35), with higher stress levels reported by women and those under age 30 y. Three-quarters of participants who participated in telemedicine visits were satisfied with the encounters; however, most reported a preference for in-person visits.
People with muscular dystrophy reported moderate stress and challenges during the COVID-19 pandemic. Interventions such as exercise and stress-coping strategies, including strategies specific to women or individuals <30 y, may be important. Further investigation is needed into the role of telemedicine in the care of individuals with muscular dystrophy.
A prospective de-identified electronic survey was distributed to adults with self-reported facioscapulohumeral muscular dystrophy (FSHD), myotonic dystrophy (DM), and limb-girdle muscular dystrophy (LGMD) enrolled in national registries or with patient advocacy groups. The COVID-19 Impact Survey was developed by muscular dystrophy experts in association with patient collaborators and advocacy groups. The Perceived Stress Scale was used to measure perceived stress.
Respondents (n = 774: 56% FSHD; 35% DM, and 9% LGMD) were mostly women and middle-aged (range 19-87 y). Rates of COVID-19 infections were low (<1%), compliance with local social distancing guidelines and policies high (98%). Major challenges reported during the pandemic included: obtaining treatment (40%), managing stress (37%), social distancing (36%), and obtaining essentials (34%). The majority reported a slight worsening in their disease state. Respondents reported moderate stress levels (stress score = 15.4; range = 0-35), with higher stress levels reported by women and those under age 30 y. Three-quarters of participants who participated in telemedicine visits were satisfied with the encounters; however, most reported a preference for in-person visits.
People with muscular dystrophy reported moderate stress and challenges during the COVID-19 pandemic. Interventions such as exercise and stress-coping strategies, including strategies specific to women or individuals <30 y, may be important. Further investigation is needed into the role of telemedicine in the care of individuals with muscular dystrophy.
摘要：
在这项研究中,我们研究了2019年冠状病毒病(COVID-19)大流行和社会指南对肌营养不良患者的社会和健康影响.
一项前瞻性去识别电子调查被分发到自我报告的面肩肱肌营养不良（FSHD）的成年人，强直性肌营养不良（DM），和四肢带型肌营养不良症（LGMD）在国家注册或患者倡导团体中注册。COVID-19影响调查是由肌肉萎缩症专家与患者合作者和倡导团体联合制定的。感知压力量表用于测量感知压力。
受访者(n=774：56%FSHD；35%DM，和9％的LGMD）主要是女性和中年人（范围19-87岁）。COVID-19感染率较低(<1%)，遵守当地社会距离指导方针和政策的比例很高(98%)。大流行期间报告的主要挑战包括：获得治疗（40％），管理压力（37%），社会距离(36%)，并获得必需品(34%)。大多数人报告其疾病状态略有恶化。受访者报告中等压力水平（压力评分=15.4；范围=0-35），妇女和30岁以下的妇女报告的压力水平较高。参与远程医疗访问的参与者中有四分之三对这些遭遇感到满意；然而，大多数人报告偏爱面对面访问。
在COVID-19大流行期间，患有肌营养不良的人报告了中度压力和挑战。锻炼和压力应对策略等干预措施，包括针对<30年的女性或个人的策略，可能很重要。需要进一步研究远程医疗在肌肉萎缩症患者护理中的作用。
一项前瞻性去识别电子调查被分发到自我报告的面肩肱肌营养不良（FSHD）的成年人，强直性肌营养不良（DM），和四肢带型肌营养不良症（LGMD）在国家注册或患者倡导团体中注册。COVID-19影响调查是由肌肉萎缩症专家与患者合作者和倡导团体联合制定的。感知压力量表用于测量感知压力。
受访者(n=774：56%FSHD；35%DM，和9％的LGMD）主要是女性和中年人（范围19-87岁）。COVID-19感染率较低(<1%)，遵守当地社会距离指导方针和政策的比例很高(98%)。大流行期间报告的主要挑战包括：获得治疗（40％），管理压力（37%），社会距离(36%)，并获得必需品(34%)。大多数人报告其疾病状态略有恶化。受访者报告中等压力水平（压力评分=15.4；范围=0-35），妇女和30岁以下的妇女报告的压力水平较高。参与远程医疗访问的参与者中有四分之三对这些遭遇感到满意；然而，大多数人报告偏爱面对面访问。
在COVID-19大流行期间，患有肌营养不良的人报告了中度压力和挑战。锻炼和压力应对策略等干预措施，包括针对<30年的女性或个人的策略，可能很重要。需要进一步研究远程医疗在肌肉萎缩症患者护理中的作用。
