Mental health of a large group of adults with disorders of sex development in six European countries
File(s)
Author(s)
Type
Journal Article
Abstract
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.
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.
Date Issued
2019-09-01
Date Acceptance
2019-09-01
Citation
Psychosomatic Medicine, 2019, 81 (7), pp.629-640
ISSN
0033-3174
Publisher
Lippincott, Williams & Wilkins
Start Page
629
End Page
640
Journal / Book Title
Psychosomatic Medicine
Volume
81
Issue
7
Copyright Statement
© 2019 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Psychosomatic Society. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
Subjects
ADHD = attention-deficit
AIS = androgen insensitivity syndrome
anxiety
AQ-10=Short Autism Spectrum Quotient
ASRS = Adult ADHD Self-Report Scale
attention-deficit
autism
AUTISTIC TRAITS
BIS = Body Image Scale
BODY-IMAGE
CAH = congenital adrenal hyperplasia
CONGENITAL ADRENAL-HYPERPLASIA
CROSS-NATIONAL PREVALENCE
CSQ = Customer Satisfaction Questionnaire
depression
differences of sex development
disorders of sex development
DSD = disorders
GD = gonadal dysgenesis
HADS = Hospital Anxiety and Depression Scale
hyperactivity disorder
intersex conditions
KLINEFELTER-SYNDROME
KS = Klinefelter syndrome
Life Sciences & Biomedicine
Psychiatry
PSYCHOLOGICAL ADJUSTMENT
Psychology
Psychology, Multidisciplinary
QUALITY-OF-LIFE
REPORT SCALE ASRS
RSES = Rosenberg Self-Esteem Scale
Science & Technology
SELF-ESTEEM
Social Sciences
TS = Turner syndrome
TURNER-SYNDROME
WHO = World Health Organization
Publication Status
Published
Date Publish Online
2019-09-01