TY - JOUR
T1 - Mental Health of a Large Group of Adults with Disorders of Sex Development in Six European Countries
AU - De Vries, Annelou L.C.
AU - Roehle, Robert
AU - Marshall, Louise
AU - Frisén, Louise
AU - Van De Grift, Tim C.
AU - Kreukels, Baudewijntje P.C.
AU - Bouvattier, Claire
AU - Köhler, Birgit
AU - Thyen, Ute
AU - Nordenström, Anna
AU - Rapp, Marion
AU - Cohen-Kettenis, Peggy T.
N1 - Funding Information:
Ethical approval was obtained as appropriate to each country, for example, Ethics Commission of the Charité Universitätsmedizin (Reference Number EA2/069/13). All participants gave written informed consent, and if the participant was underage, both the participants and the parents did so. dsd-LIFE was registered in the German Clinical Trials Register (DRKS00006072) and funded by the European Seventh Framework Programme (FP7/2007-2013) under Grant Agreement Number 305373.
Funding Information:
Source of Funding and Conflicts of Interest: This study was funded by the European Union Seventh Framework Program (Grant 305373 [FP7/2007-2013], to all authors). The authors report no conflicts of interest.
Publisher Copyright:
© Lippincott Williams & Wilkins.
Copyright:
Copyright 2019 Elsevier B.V., All rights reserved.
PY - 2019/9/1
Y1 - 2019/9/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85071713483&partnerID=8YFLogxK
U2 - 10.1097/PSY.0000000000000718
DO - 10.1097/PSY.0000000000000718
M3 - Journal articles
C2 - 31232913
AN - SCOPUS:85071713483
SN - 0033-3174
VL - 81
SP - 629
EP - 640
JO - Psychosomatic Medicine
JF - Psychosomatic Medicine
IS - 7
ER -