Though arm strength and breathing ability get worse quickly when patients with Duchenne muscular dystrophy (DMD) become adults, many still have a relatively positive view of their health-related quality of life, according to a recent study published in the journal Neuromuscular Disorders.
The study included 63 men with DMD in Sweden. By about age 27, almost half of them could only move their fingers, or even less. Many also had very weak lungs and needed machines to help in breathing.
About 70% of the men had pneumonia, a serious lung infection, at least once. About one out of every four pneumonia cases was so serious that the person needed care in an intensive care unit. Some patients even needed a tracheostomy, which is a tube placed in the neck to help them breathe.
Scoliosis, a C- or S-shaped curvature of the spine, was linked to a higher chance of getting pneumonia. However, patients who had surgery to fix scoliosis got pneumonia less often than those who did not have the surgery.
The study also showed that many patients had several health problems at the same time. Almost 90% took five or more medicines every day. These included drugs for the heart, steroids and treatments for stomach issues.
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Even with these serious problems, many patients said they felt their quality of life was good. They rated their health around 70 out of 100, which is not too far from the average score of people in Sweden (79.5). Researchers call this the “well-being paradox.”
However, other types of health scoring showed lower results, meaning there is a difference between how patients feel and how their health is measured.
“A deeper understanding of factors influencing overall HRQoL [Health-Related Quality of Life] from the patient’s perspective is essential for providing care aimed at enhancing quality of life in adults with DMD,” the researchers said.
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