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An Opportunity for Genetic Counseling Intervention: Depression in Parents of Individuals with Proteus Syndrome
Authors:Kathryn F. Peters  Leslie G. Biesecker
Affiliation:(1) Office of the Clinical Director, Pennsylvania State University, Center for Developmental and Health Genetics, 101 Amy Gardner House, University Park, Pennsylvania, 16802;(2) Genetic Disease Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD
Abstract:Depression is common, affecting 2–5% of the general population. Parental depression can confound adjustment to, and caring for, a child with a genetic condition. As part of a study on psychosocial issues of parents caring for children with Proteus syndrome, 31 parents (20 mothers and 11 fathers) completed a depression screening tool, the Beck Depression Inventory. Approximately 23% (4/20 mothers and 3/11 fathers) scored positive on the tool. Pessimism, sense of failure, general lack of satisfaction, sense of punishment, self-dislike, social withdrawal, indecisiveness, work inhibition, somatic preoccupation, and loss of libido were reported more frequently by the group of parents with positive screen results than those with normal results. These data suggest that symptoms of depression may be prevailing among parents of individuals with Proteus syndrome. Because effective interventions for depression are readily available, genetic counselors working with families affected with rare, overgrowth disorders should specifically assess parents for physical and affective symptoms of depression and refer them for appropriate clinical treatment.
Keywords:Depression  Proteus syndrome  genetic counseling
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