Knowing Nature and Extent of Pain May Help Improve Quality of Life in Duchenne MD Kids, Study Says

Pain is a common and frequent problem among patients with Duchenne muscular dystrophy (DMD) and is associated with physical limitations and poor quality of life in these patients, according to a new study conducted by researchers in Brazil.

The authors argue that knowing several aspects about pain, such as frequency, intensity, location, and discomfort, can be used to potentially manage pain and improve the quality of life in DMD patients.

The study, “Pain Characterization In Duchenne Muscular Dystrophy,” published in the journal Arquivos de Neuro-Psiquiatria, reviewed several published articles to investigate the relationship between pain and Duchenne MD.

Although pain – described as “an unpleasant sensory and emotional experience that is associated with actual or potential tissue damage or described in such terms” – has not been considered a major symptom in DMD, a growing number of studies suggest chronic pain is a common symptom among patients of neuromuscular diseases, and can lead to adverse consequences on function and quality of life.

Knowledge about the nature of pain and its extent in children and adolescents with DMD is limited, but this information is relevant to provide better treatment options and to understand the impact of pain on patient outcome.

According to the studies analyzed by the authors, pain is a common and frequent problem in individuals with DMD, linking to their physical limitations and general aspects of the disease, vertebral fractures, and scoliosis. In those studies, several instruments were used to qualify and quantify pain, the most common being the Visual Analogue Scales (VAS) and the Brief Pain Inventory (BPI).

Two important aspects measured in the studies were pain frequency and duration. While some studies conducted only an assessment of pain, others analyzed pain at different times: before and after two years of bisphosphonate therapy; before surgery; and post-surgery after six weeks, one year, two years, and in six-month follow-ups.

“The main factors perceived by DMD adolescents to exacerbate pain were sitting, too much movement/activity, and being lifted and transferred; some examples of other factors exacerbating pain were driving the power wheelchair, lying in bed, especially at night, and thinking about the pain,” the authors wrote.

“The most common factors that were identified as relieving pain were resting, changing position, massage, and use of painkillers. Other factors for relieving pain were doing something fun and thinking about something else.”

The analysis also revealed that with interventions such as surgery or drug administration, boys with DMD showed some improvement on pain reports, or even complete resolution, whereas no intervention kept the pain score the same.

“The studies reviewed showed chronic pain as a common and frequent problem in individuals with DMD, occurring in more than one body location, usually in the lower back and legs,” the authors wrote. “Pain in patients with DMD was associated to physical limitations and general aspects of the disease, vertebral fractures and scoliosis, as well as being associated with poor quality of life and emotional aspects.”