Survey Highlights Mental Health Impact of COVID-19 on MD Families

Marisa Wexler MS avatar

by Marisa Wexler MS |

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The COVID-19 pandemic has had a substantial impact on the mental health and quality of life of people affected by muscular dystrophy (MD).

One big underlying issue for the families of those with Duchenne and Becker muscular dystrophies is that the pandemic has caused many patients to miss medical tests.

That’s according to the results of a survey of Becker and Duchenne families conducted by Parent Project Muscular Dystrophy (PPMD). The survey received 239 responses from families living in 30 states in the U.S.

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“Findings from this report are limited by sample size but provide a framework for future survey research,” the results state.

The survey was conducted from December 2020 through February 2021, with the aim of better understanding how the COVID-19 pandemic has affected the muscular dystrophy community. PPMD had conducted a similar survey earlier last year, with the findings released in August 2020.

Most of the survey respondents had gone to in-person healthcare appointments during the pandemic, either exclusively (22%) or with a mix of in-person and virtual care (46%). Nearly all respondents reported not having missed a dose of treatment during the pandemic.

Respondents who used telemedicine — receiving care over the phone or via computer — generally reported being satisfied, though this varied somewhat based on the type of care: rates of satisfaction were highest in appointments with neurologists, cardiologists, neuropsychologists, and nutritionists.

Of note, in an open-ended portion of the survey asking about the overall impact of the pandemic, 28% of respondents said that moving to telemedicine due to COVID-19 was a negative experience, while 14% said it was a positive experience.

Just over half (53%) of respondents had not missed any medical testing due to the pandemic — however, the remaining 47% did report some missed tests. This finding “is a cause for concern due to the need for consistent, regular monitoring of people with Duchenne,” according to the PPMD.

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Delayed testing was a source of anxiety for respondents. Complications with work, money, and school that were exacerbated by the pandemic, as well as feelings of isolation and fear of the disease itself, also contributed to stress.

“Unsurprisingly, findings showed that the pandemic has continued to have a negative impact on overall mental health and quality of life,” the PPMD stated, noting a need to explore strategies that might lessen these negative impacts.

Notably, more than one in five respondents — 22% — said that the pandemic had indirectly worsened their child’s muscular dystrophy, speeding disease progression due to factors like mental health problems and/or reduced physical activity.

In addition, 42% of respondents reported that the pandemic had impacted their job or financial situation. While this figure was lower than the 77% of respondents who reported such an impact in the earlier survey, the PPMD noted that this figure is still “not insignificant.”

Among respondents participating in clinical trials, about a third (31%) reported missing trial assessments during the pandemic, and one in 10 said the pandemic had stopped them from enrolling in a clinical trial.