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
JournalPsychosomatic Medicine
Volume81
Issue number7
DOIs
Publication statusPublished - 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.
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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.",
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.}",
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pages = "629--640",
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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, 2019, p. 629-640.

Research output: Contribution to journalArticleAcademicpeer-review

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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

Y1 - 2019

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.

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