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

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.
Original languageEnglish
Pages (from-to)629-640
Number of pages12
JournalPsychosomatic Medicine
Volume81
Issue number7
DOIs
Publication statusPublished - 1 Sep 2019

Cite this

de Vries, Annelou L. C. ; Roehle, Robert ; Marshall, Louise ; Frisén, Louise ; van de Grift, Tim C. ; Kreukels, Baudewijntje P. C. ; Bouvattier, Claire ; Köhler, Birgit ; Thyen, Ute ; Nordenström, Anna ; Rapp, Marion ; Cohen-Kettenis, Peggy T. / Mental Health of a Large Group of Adults with Disorders of Sex Development in Six European Countries. In: Psychosomatic Medicine. 2019 ; Vol. 81, No. 7. pp. 629-640.
@article{8d9bf37d568345e4887ee8eb9c55ef52,
title = "Mental Health of a Large Group of Adults with Disorders of Sex Development in Six European Countries",
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.",
keywords = "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",
author = "{de Vries}, {Annelou L. C.} and Robert Roehle and Louise Marshall and Louise Fris{\'e}n and {van de Grift}, {Tim C.} and Kreukels, {Baudewijntje P. C.} and Claire Bouvattier and Birgit K{\"o}hler and Ute Thyen and Anna Nordenstr{\"o}m and Marion Rapp and Cohen-Kettenis, {Peggy T.}",
year = "2019",
month = "9",
day = "1",
doi = "10.1097/PSY.0000000000000718",
language = "English",
volume = "81",
pages = "629--640",
journal = "Psychosomatic Medicine",
issn = "0033-3174",
publisher = "Lippincott Williams and Wilkins",
number = "7",

}

Mental Health of a Large Group of Adults with Disorders of Sex Development in Six European Countries. / de Vries, Annelou L. C.; Roehle, Robert; Marshall, Louise; Frisén, Louise; van de Grift, Tim C.; Kreukels, Baudewijntje P. C.; Bouvattier, Claire; Köhler, Birgit; Thyen, Ute; Nordenström, Anna; Rapp, Marion; Cohen-Kettenis, Peggy T.

In: Psychosomatic Medicine, Vol. 81, No. 7, 01.09.2019, p. 629-640.

Research output: Contribution to journalArticleAcademicpeer-review

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.

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.

KW - ADHD = attention-deficit/hyperactivity disorder

KW - AIS = androgen insensitivity syndrome

KW - AQ-10 = Short Autism Spectrum Quotient

KW - ASRS = Adult ADHD Self-Report Scale

KW - Abbreviations

KW - BIS = Body Image Scale

KW - CAH = congenital adrenal hyperplasia

KW - CSQ = Customer Satisfaction Questionnaire

KW - DSD = disorders/differences of sex development

KW - GD = gonadal dysgenesis

KW - HADS = Hospital Anxiety and Depression Scale

KW - KS = Klinefelter syndrome

KW - RSES = Rosenberg Self-Esteem Scale

KW - TS = Turner syndrome

KW - WHO = World Health Organization

KW - anxiety

KW - attention-deficit/hyperactivity disorder

KW - autism

KW - depression

KW - disorders of sex development

KW - intersex conditions

UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85071713483&origin=inward

UR - https://www.ncbi.nlm.nih.gov/pubmed/31232913

U2 - 10.1097/PSY.0000000000000718

DO - 10.1097/PSY.0000000000000718

M3 - Article

VL - 81

SP - 629

EP - 640

JO - Psychosomatic Medicine

JF - Psychosomatic Medicine

SN - 0033-3174

IS - 7

ER -