A patient‐focused survey to assess the effects of the COVID‐19 pandemic and social guidelines on people with muscular dystrophy

Abstract

Introduction/Aims 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. Methods 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. Results 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. Discussion 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.

Understanding the Perseverance of the Muscular Dystrophy Community One-Year into the COVID-19 Pandemic

“…However, this may be due to the small numbers in our sample as only 6.7% reported being non-Caucasian and 4.7% reported as Hispanic/Latino. The social strategies employed to reduce the spread of COVID-19, challenges due to the pandemic and social distancing, and research participation reported by participants at the second time point were similar to our findings at the beginning of the pandemic [4].…”

“…We found that participants reported challenges with obtaining treatment and essentials, stress management, and social distancing. They also reported moderate stress levels, which were comparable to the general population [4].…”

“…Interestingly, study participants reported different stress management techniques than those previously reported even when the most frequentlycited challenges were the same at each of the two time points. At the year one time point, participants reported maintaining a routine, faith, and connecting with family and friends versus sleep/rest and exercise as reported earlier in the pandemic [4]. The time point of this survey was after vaccines were developed, approved and administered to essential workers and older adults.…”

“…The study was approved by the University of Rochester Medical Center Institutional Review Board, and exempted from HIPAA consent requirements, as all surveys were de-identified. Like our prior study [4], participants completed the survey through a weblink connected to a centralized REDCap database [5]. The survey was distributed to individuals with facioscapulohumeral dystrophy (FSHD), myotonic dystrophy (DM), or Limb Girdle Muscular Dystrophy (LGMD) via patient registries and patient advocacy groups.…”

“…We also modified the multiplechoice responses on some questions to reflect what we learned from the initial COVID-19 Impact Survey. Participants also completed the Perceived Stress Scale (PSS) as before [4,6]. The PSS is a 10-item patient reported measure of perceived stress.…”