Voice dissatisfaction in individuals with a disorder of sex development

Objective Changes of sex hormone levels in disorders of sex development ( DSD ) can affect the body, including the vocal folds, during and after foetal development. The voice is a gender characteristic that may also be affected. There is a lack of knowledge on voice alteration in DSD . To explore this in different forms of DSD , we describe the prevalence of voice alterations and investigate patient satisfaction with voice. Design The study is part of dsd‐ LIFE , a multicentre cross‐sectional clinical evaluation project assessing the long‐term outcomes of surgical, hormonal and psychological interventions in individuals with DSD . Patients The study included 1040 individuals with different forms of DSD , that is Turner and Klinefelter syndromes, different degrees of gonadal dysgenesis and 46 XY DSD . Participants were recruited through patient advocacy groups and health care. Measurements Satisfaction with voice, Adam's apple, if patient's self‐identified gender was mistaken on the phone leading to distress. Results A vast majority of the participants with DSD (between 58.3% to 82% in various groups) were not satisfied with their voice, and approximately 15% (n = 147) were mistaken on the phone in accordance with self‐identified gender. For 102 participants, this caused distress. Conclusions We have identified that voice problems are a cause of distress in all forms of DSD . This result needs to be confirmed and compared with controls. We recommend that evaluation of the voice should be included in future international guidelines for management of DSD .