Key Findings: Neurobehavioral Concerns among Males with Dystrophinopathy Using Population-Based Surveillance Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network

Research shows nearly half of men with Duchenne or Becker muscular dystrophy included in this new study have mental health concerns.

Researchers from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) have published new data on mental health concerns among males with Duchenne or Becker muscular dystrophy (DBMD). This study has important information for people with DBMD, their families, and their caregivers. MD STARnet is funded and managed by the Centers for Disease Control and Prevention (CDC).

This research, recently published in the Journal of Developmental and Behavioral Pediatrics, found that nearly half (45%) of the oldest males in each family affected with DBMD had at least one of three mental health concerns: behavior concerns, depressed mood, or attention-deficit/hyperactivity disorder (ADHD). This study also looked at relationships between these mental health concerns and the use of corticosteroids and the decline in ability to walk independently. Corticosteroids (steroids) are medications that slow the muscle damage caused by DBMD. In this study, the decline in ability to walk independently was measured by the age at which the use of a wheelchair or scooter was needed at least part time.

You can read a summary of the article here.

Did you know?

Muscular dystrophies are a group of genetic (inherited) disorders that result in muscle weakness over time.
The most common type of muscular dystrophy in children is Duchenne muscular dystrophy (DMD), which mostly affects males.
Historically, DMD has resulted in loss of the ability to walk between ages 7 and 13 years, and death in the teens or 20s.
Becker muscular dystrophy (BMD) is similar to DMD, but has later onset and slower, more variable progression of symptoms. ¹

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Researchers publish new study on mental health among males with Duchenne or Becker muscular dystrophy.

Important findings from this study

Males 1-29 years of age with DBMD who used steroids were more than twice as likely to have behavioral concerns as those who did not use steroids.
Males 1-29 years of age with DBMD who were losing their ability to walk were more likely to have behavioral concerns, and more than three times as likely to have depressed mood as those who were still able to walk independently.
Males 1-29 years of age with DBMD who used steroids were not more likely to have ADHD.
Males 1-29 years of age with DBMD who were losing their ability to walk were not more likely to have ADHD.

What this study adds

Previous studies use data from patients at specialty clinics or those recruited from patient support organizations. Neither of these methods is designed to include all patients with DBMD. Many of these previous studies also rely on information provided by patients or their parents, instead of information from medical records.

This new study strengthens previous studies. MD STARnet is the only research program designed to collect health information from medical records on everyone with DBMD living in specific areas of the United States. This study is based on health information from people with DBMD living in Arizona, Colorado, Iowa, Georgia, and western New York State.

What you can do

A person with DBMD: Talk to your doctor if you are concerned about your emotional or behavioral health. Your doctor can help determine if you are having a problem.
Families and caregivers: Become familiar with the possible side effects your son may experience if he takes steroids. Talk to your son’s doctor if you are concerned about his mental health, especially as his condition progresses. Encourage regular mental health screenings and treatment if problems develop.
Healthcare professionals: Consider regular mental health monitoring and assessments for your patients with DBMD, especially as the disease progresses.
Researchers: Consider conducting additional research to determine evidence-based treatments for mental health concerns among individuals with DBMD.

What CDC is doing

CDC collaborated with other government agencies, healthcare professionals, and patient support organizations to develop care considerations for DMD. These were originally published in 2009 and 2010. A similar collaboration is currently underway to update the care considerations, with publication anticipated in 2016. Both the old and new versions of the care considerations address mental health. Evaluations are recommended for coping skills, speech, language, and physical development, autism spectrum disorder, and family or caregiver services.

About this study

MD STARnet researchers compiled data mostly from available medical records at muscular dystrophy specialty clinics. These records may not have included information from psychiatrists or other mental health professionals.
MD STARnet collected medical record data annually. This method allowed researchers to study over time the relationships between mental health concerns, steroid use, and the advancement of disease.
Researchers used data from the oldest male with DBMD in each family. Using this method, researchers were able to exclude younger sons in those families with multiple sons with DBMD because younger sons may have received more monitoring or treatment from healthcare professionals, based on their experience with an older son. In this study however, no differences were found between sons.
These findings reflect five MD STARnet sites — Arizona, Colorado, Iowa, Georgia, and 12 counties in Western New York. These findings may not represent the entire DBMD population in the United States.