Anxiety and Obsessive-Compulsive Disorder (OCD) in Adults with CHARGE Syndrome

Background CHARGE syndrome is a rare genetic disorder with multiple physical, cognitive, behavioral, and sensory impairments. Anxiety is a common finding. Difficulties with pain, sleep, sensory impairment, communication, daily stress, and unpredictable environments are potential contributing factors to this anxiety. Further research is needed to gain a better understanding of the presentation of anxiety in CHARGE syndrome to promote proper diagnosis and treatment of anxiety. Methods An on-line survey was distributed to adults and guardians of adults with CHARGE syndrome. Fifty-two participants provided responses to the Developmental Behavior Checklist-Parent Version , the Florida Obsessive-Compulsive Inventory , and the Generalized Anxiety Disorder 7-Item Scale . Participants also provided demographic data, diagnostic characteristics of CHARGE, their perception of their anxiety, diagnosed mental health disorders, and the frequency of other potential factors of anxiety (i.e. pain and sleep concerns). Descriptive statistics, independent samples t-tests, and Pearson’s correlations provided information on the presentation of anxiety and the relationships between potential factors and anxiety subscale scores. A hierarchical multiple linear regression analysis and mediation analysis was used to investigate if sleep mediates the relationship between pain and anxiety. Results Generalized anxiety disorder and obsessive-compulsive disorder were the first (39% of sample) and fourth (27% of sample) most common mental health diagnoses reported and 50% of the sample had been diagnosed with at least one anxiety disorder. The most commonly reported anxious behaviors included getting obsessed with an idea or activity, being impatient, getting upset or distressed over small changes in the routine or environment, and being tense, anxious, or worried. Sleep was found to mediate the relationship between pain and anxiety. Conclusions This study has implications for understanding the behavioral phenotype of CHARGE syndrome. Based on self-report or legal guardian report, anxiety is a common experience among individuals with CHARGE; generalized anxiety disorder and obsessive-compulsive disorder diagnoses/behavior are the most frequently reported. Further research into the management of pain and improvement of sleep as anxiety interventions for individuals with CHARGE may prove fruitful.