Background: The American Academy of Pediatrics (AAP) recommends regular psychosocial screening for boys with Duchenne Muscular Dystrophy (DMD), stating that this population is at increased risk of mood disorder. However, there are few studies that have examined the prevalence or incidence of anxiety and depression, and nearly all are based on parent/caregiver perspective.
Objectives: This study aimed to determine the prevalence of significant anxiety and depression symptoms in the DMD population at the neuromuscular clinic of large institution, and how it might be reported differently based on patient or parent report.
Approach: 41 boys and men with DMD were recruited through the University of Virginia (UVA) Children’s Hospital Neuromuscular Clinic. Each patient and caregiver dyad completed a series of questionnaires, including the Children’s Depression Inventory (CDI) and the Screen for Child Anxiety Related Disorders (SCARED), the gold standards for screening for depression and anxiety, respectively, in children.
Results: Both patients and their parents rated higher levels of anxiety symptoms than the general population on the SCARED questionnaire, about 25% and 33% respectively, as opposed to the typical 15% endorsed by the general pediatric population. Increased symptoms of social and separation anxiety were reported by both patients and caregivers. Only 10% of patients had elevated depression scores on the CDI, and 15% of parents rated elevated depression scores for their children. The CDI also provides parent subscores of emotional and functional problems. While only 15% were elevated in the emotional subscore, another 20% were in the high average range.
Conclusions: Boys and men with DMD rate both their anxiety and depression symptoms as slightly better than what is perceived by their parents/caregivers. However, both patients and parents rated anxiety symptoms significantly higher than the general population, providing evidence that includes the patient perspective in favor of the regular screening recommended by the AAP. Depression scores are more similar to those of the general population. However the increased emotional as opposed to functional scores reported by the parents is worth noting, especially as DMD is typically characterized first as a disease impacting function.