Pediatric patients with neuromuscular disorders often receive care for their chronic disease through a multidisciplinary team of healthcare providers. Lacking in this multidisciplinary approach, however, is a wide-ranging assessment of these patients’ mental health. Moreover, the mental health of the caregivers often gets overlooked.
We aim to determine the prevalence of mental health concerns in patients with neuromuscular disease, as well as in their caregivers.
Patients 13 years and older attending the Lurie Children’s Muscular Dystrophy Association (MDA) with diagnosis of a chronic, progressive neuromuscular disorder and adult legal guardians of children were eligible to participate in the study. Questionnaires (Beck Depression Inventory, Beck Anxiety Inventory, and Beck Anxiety Inventory for Youth) were distributed to participating subjects.
The average age of enrolled patients was 14.5 years of age, 70% male (14/20), and 30% (6/20) with DMD diagnosis. 15% (n=3) had scores indicating mild-to-moderate depression and 5% (n=1) had elevated depression on the Beck Depression Inventory (BDI-II). 25% (n=5) had scores indicating mild-to-moderate anxiety and 5% (n=1) with extreme anxiety on Beck Anxiety Inventory for Youth (BAI-Y). 25% (n=5) received mental health referrals following review of scores. The average age of caregivers was 47 years and 68% (15/22) were female. 18% (n=4) had scores indicating mild-to-moderate depression on BDI -II and 9% (n=2) had scores indicating severe depression. 9% (n=2) had scores indicating moderate-to-severe anxiety on Beck Anxiety Inventory (BAI). 9% (n=2) received mental health referrals.
Mental health concerns are prevalent pediatric patients with neuromuscular disorders and their caregivers. Not evaluating for these concerns represents a missed opportunity to improve quality of life in these families. Comprehensive care of this population should include an assessment of mental health in patients and their caregivers, and referrals as appropriate.