Abstract
An estimated 3.7 million people in the United States pull out their hair in a chronic or compulsive manner and suffer from excessive hair loss and consequent personal distress. This psychiatric disorder, Trichotillomania (TTM), may result in pronounced functional impairment and has been shown to be associated with depression, anxiety, low self-esteem and impaired quality of life. The purpose of this study was to explore beliefs of individuals with TTM about the role of genetics in causation and heritability of the disorder, and their opinions regarding genetic testing and counseling. We recruited individuals with a current or previous history of TTM through several online TTM support groups to participate in an online, anonymous survey. A total of 299 individuals completed the survey, which consisted of 40 multiple choice and open-ended questions. Respondents put a stronger emphasis on environmental versus genetic contribution to the development of TTM. Many \r (35%) of our respondents were unsure of what they believe the heritability of TTM is, and of the participants who believe TTM is inherited, the greatest proportion (29%) overestimated what is currently thought to be a 10.6% inheritance rate of TTM (Keuthen et al., 2014). Many (63%) reported being interested in hypothetical genetic testing for TTM and 43% indicated that they would be interested in genetic counseling. However the largest proportion (48%) of our cohort did not understand how genetic counseling would be beneficial for them. Additionally, very few (n=11) individuals from our study were offered genetic counseling and those who met with a genetic counselor reported that this meeting was not helpful. Our findings suggest that although there is interest in pursuing counseling for TTM, there is an apparent gap between this interest and current practice and understanding of genetic counseling for TTM. Future studies addressing why few people with TTM have ever been referred for genetic counseling, why this lack of understanding regarding what people with TTM will gain from meeting with a genetic counselor exists, and what people with TTM view as an effective genetic counseling session, are warranted.