Mental health problems such as anxiety and depression are common for people with muscular dystrophy, affecting most individuals in the community, according to a new survey.
The survey was carried out by Bionews, the parent company of Muscular Dystrophy News.
Survey results indicate that loneliness, regret, and uncertainty play key roles in driving mental health distress among people with muscular dystrophy and their caregivers — underscoring the importance of addressing social and emotional well-being, not just physical health, when caring for patients.
At the same time, the results also challenge ableist assumptions that physical limitations are tied to mental health — in fact, results indicate that muscular dystrophy patients who need mobility aids report more gratitude than those who don’t, while overall mental distress in the two groups showed no meaningful differences.
The survey included a total of 120 respondents, including 79 people with muscular dystrophy and 31 family members, as well 10 people who were professional caregivers or had other connections to the community. Of note, the analysis was not based on muscular dystrophy type, and instead evaluated the community as a whole. Duchenne, Becker, myotonic dystrophy, and limb-girdle muscular dystrophy were among the disease types represented in the sample.
“What looking at the community as a whole does give us is a clear picture of what people share, regardless of their type. And it tells us exactly where to go next,” Marcella Debidda, PhD, president of patient insights and clinical solutions at Bionews, said in an interview with Muscular Dystrophy News.
Most respondents not receiving any type of formal mental health care
Results of the survey showed that mental health problems are common in the muscular dystrophy community. Nearly half (46.7%) of the respondents said anxiety was a concern for them, and more than a third (38.3%) said depression was a concern. In fact, there were slightly more respondents who reported both anxiety and depression (26.7%) than respondents who reported no mental health concerns at all (25%), according to Bionews.
Notably, although mental health challenges were a common issue, about 80% of the respondents were not receiving any type of formal mental health care, such as therapy or counseling. When the researchers asked respondents to rate how often they used 10 different coping strategies, therapy/counseling came in last. Therapy was also rated the least helpful of all the coping mechanisms. The most helpful were humor, staying busy with activities, and talking to loved ones.
These data suggest that there’s a major gap between the mental health problems that people with muscular dystrophy are facing, and the support they are receiving through formal mental health systems. This may reflect a lack of mental health professionals who have the training to meaningfully help people with muscular dystrophy.
“Getting people through the door isn’t enough on its own. The support has to fit the reality of living with a progressive condition. That means therapists who understand the disease, and approaches that make room for grief, regret and loss,” Debidda said.
It’s also worth looking at what people said does help, she added.
“Humor and finding lightness came out on top … followed by staying busy, talking with loved ones, and focusing on small goals,” Debidda said. “Those are simple, human, and social. Providers can learn a lot from that.”
Loneliness the biggest driver of mental health distress
Statistical analyses showed that the single biggest driver of mental health distress was loneliness. In fact, more than a third (36.8%) of variation in overall distress could be explained by loneliness alone. The next-biggest factor was regret. Collectively, loneliness and regret explained almost half (48.2%) of the variation in overall mental health distress.
Uncertainty was also a major driver of distress. When asked to rate their uncertainty across various situations, nearly half (49.1%) of respondents scored a four or higher on a scale out of five points.
These data imply that interventions targeting loneliness, regret, and uncertainty may be invaluable for people affected by muscular dystrophy. For example, support groups might be offered to combat loneliness, and grief-informed counseling could help manage regret.
“What I find hopeful is that these are things we can actually work on. … The biggest drivers [of distress] are emotional, and they can be changed,” Debidda said. “Programs built around reducing isolation, alongside sharing information, could make a real difference for this community.”
Another topic addressed the psychological assets that patients possess, and that could be built upon. More than two-thirds of the respondents either experienced both high positive and high negative emotions, which means they manage distress while holding on to hope and determination, or experienced primarily positive emotions, with distress levels being lower.
“Uncertainty is a constant reminder to live each day to its fullest. Enjoy the good days, catch up on reading on the others,” a patient said. “I find joy in simple activities and family/friends relationships,” added another.
Patients who require mobility aids reported feeling more gratitude
A common assumption, especially among able-bodied people, is that for someone with a physically disabling disease such as muscular dystrophy, mental health is closely tied to physical limitations. However, the results of this survey don’t line up with that ableist assumption.
Many people with muscular dystrophy rely on mobility aids like wheelchairs or canes to get around. If physical limitations were the main driver of mental health problems, then you’d expect that patients who need mobility aids would have worse mental health than those who don’t. But the survey results showed that overall mental distress was essentially identical among patients who did or did not need mobility aids.
If care focuses only on physical function, it will miss some of the key drivers of distress. Our data clearly points us to the emotional side: the things clinical care rarely measures, like loneliness, regret and uncertainty..
In fact, results indicated that patients who require mobility aids usually reported feeling more gratitude and determination (the sense of being in control of one’s own destiny) than those who don’t use aids.
“For me, the lesson is twofold,” Debidda said. “First, we shouldn’t assume that the people with the most physical limitations are the ones suffering most emotionally. Second, if care focuses only on physical function, it will miss some of the key drivers of distress. Our data clearly points us to the emotional side: the things clinical care rarely measures, like loneliness, regret, and uncertainty.”
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