Rachel E. Trimmer, William P.L. Mandy, Francesco Muntoni, Kate E. Maresh. https://doi.org/10.1016/j.nmd.2023.12.002

This study looked at anxiety in young boys with Duchenne muscular dystrophy (DMD) and how it affects them, from their perspectives and those of their parents. Eight boys aged 7–18 and 14 parents took part in focus groups and interviews to share their experiences. Different scales that help to quantify emotional responses were used as well.

The study found that boys with DMD often worry excessively, experience intense distress, and have social anxieties. They also worry about their physical needs and changes, and are often very uncomfortable with new or unpredictable situations. The research also highlighted the importance of individual reactions, family support, social interactions, and the environment in influencing anxiety.

The boys with DMD had more emotional and overall difficulties than their peers. One of the standard anxiety and depression scale used was not very good at identifying their anxiety. In addition our research also found that many parents who sought help for their son’s anxiety were not satisfied with the support they received.

In conclusion, anxiety greatly affects the well-being and daily life of boys with DMD. Managing this anxiety requires looking at all the different factors involved, not just the symptoms themselves.