Mental Health of a Large Group of Adults with Disorders of Sex Development in Six European Countries

Annelou L. C. de Vries, Robert Roehle, Louise Marshall, Louise Frisén, Tim C. van de Grift, Baudewijntje P. C. Kreukels, Claire Bouvattier, Birgit Köhler, Ute Thyen, Anna Nordenström, Marion Rapp, Peggy T. Cohen-Kettenis

Research output: Contribution to journalArticleAcademicpeer-review

38 Citations (Scopus)


Objective The aim of the study was to evaluate psychiatric symptoms among 1022 persons with various disorders of sex development (DSDs). Methods The study was a European multicenter cross-sectional clinical evaluation in six countries. The mean (SD) age of participants was 32.1 (13.4) years. The cohort consisted of 325 individuals with Turner syndrome, 219 individuals with Klinefelter syndrome (KS), female individuals with various XY-DSD conditions (107 with and 67 without androgenization), 87 male individuals with XY-DSD conditions, and 221 female individuals with congenital adrenal hyperplasia. The Hospital Anxiety and Depression Scale, the Short Autism Spectrum Quotient, the Adult Attention-Deficit/Hyperactivity Disorder Self-Report Scale, and self-reported mental health history were used to assess psychiatric symptoms. Results Across the six DSD diagnostic groups, clinical cutoff symptom scores were reached in 19.5% of participants for anxiety, in 7.1% for depression, in 4.1% for attention-deficit/hyperactivity disorder, and in 9.1% for autism. The mean depression and anxiety scores were higher compared with population norms in men with KS and men with XY-DSD. Compared with participants with other DSD conditions, men with KS reported significantly more mental health symptoms. Self-esteem, satisfaction with care, body dissatisfaction, and experiences of shame were associated with psychiatric symptoms in many DSD conditions. Conclusions A substantial minority of adults with DSD, with KS in particular, experience psychiatric morbidity. Across DSD conditions, adults may share feelings of shame. Developing a positive self-esteem and body image may be challenging. Multidisciplinary DSD care that involves specialized mental health support can be of important value. Trial Registration German Clinical Trials Register DRKS00006072.
Original languageEnglish
Pages (from-to)629-640
Number of pages12
JournalPsychosomatic medicine
Issue number7
Publication statusPublished - 1 Sept 2019


  • ADHD = attention-deficit/hyperactivity disorder
  • AIS = androgen insensitivity syndrome
  • AQ-10 = Short Autism Spectrum Quotient
  • ASRS = Adult ADHD Self-Report Scale
  • Abbreviations
  • BIS = Body Image Scale
  • CAH = congenital adrenal hyperplasia
  • CSQ = Customer Satisfaction Questionnaire
  • DSD = disorders/differences of sex development
  • GD = gonadal dysgenesis
  • HADS = Hospital Anxiety and Depression Scale
  • KS = Klinefelter syndrome
  • RSES = Rosenberg Self-Esteem Scale
  • TS = Turner syndrome
  • WHO = World Health Organization
  • anxiety
  • attention-deficit/hyperactivity disorder
  • autism
  • depression
  • disorders of sex development
  • intersex conditions

Cite this