Understanding the Perseverance of the Muscular Dystrophy Community One-Year into the COVID-19 Pandemic.
J Neuromuscul Dis
; 9(4): 517-523, 2022.
Article
in English
| MEDLINE | ID: covidwho-1902894
ABSTRACT
INTRODUCTION:
In this study, we examined the long-term social and health impacts of the coronavirus disease 2019 (COVID-19) pandemic on people with muscular dystrophy.METHODS:
We modified our prior COVID-19 Impact Survey to assess impacts from the continuing pandemic using feedback from muscular dystrophy experts, patients, and advocacy group/registry representatives. The survey assessed COVID-19 medical history, and the effects of the pandemic on social aspects, muscle disease, and medical care. We also used the validated 10-item Perceived Stress Scale. The de-identified, electronic survey was distributed to adults with muscular dystrophy via international patient registries and advocacy group websites from February 8, 2021 to March 22, 2021.RESULTS:
Respondents (nâ=â1243ââ49% Facioscapulohumeral Muscular Dystrophy (FSHD); 43% Myotonic Dystrophy (DM), and 8% Limb-Girdle Muscular Dystrophy (LGMD)) were mostly women and middle-aged (range 18-90 years). Rates of COVID-19 infections were low at 8% with zero deaths. Reported recovery times were also short with only 9% reporting a recovery period greater than eight weeks, and 7% requiring hospitalization with one individual requiring a ventilator. Major challenges reported during the pandemic included stress management, particularly for those with LGMD (27%), and wearing a mask (24%). The majority reported a slight worsening of their disease state. Respondents reported moderate stress levels (stress scoreâ=â16.4; rangeâ=â0-39), with higher stress levels reported by women and those under age 30 years. Seventy-percent of participants who had telemedicine visits were satisfied with the encounters; however, most reported a preference for in-person visits.CONCLUSIONS:
People with muscular dystrophy found ways to manage their stress and overcome obstacles during the COVID-19 pandemic. COVID-19 infection rates and medical complications were similar to a general population. Telemedicine visits may have a more permanent role in care.Keywords
Full text:
Available
Collection:
International databases
Database:
MEDLINE
Main subject:
Muscular Dystrophy, Facioscapulohumeral
/
Muscular Dystrophies, Limb-Girdle
/
COVID-19
/
Myotonic Dystrophy
Type of study:
Observational study
/
Prognostic study
Limits:
Adult
/
Female
/
Humans
/
Male
/
Middle aged
Language:
English
Journal:
J Neuromuscul Dis
Year:
2022
Document Type:
Article
Affiliation country:
JND-220794
Similar
MEDLINE
...
LILACS
LIS