Evidence map›Paper›PMID 31232913›Full record

Observational studyPsychosomatic medicine2019

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 and 3 more

Open access · greenAbstract readMulticenter StudyObservational Study
In one paragraph

Observational study in Psychosomatic medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
40citing papers in PubMed, 2 pooled it
2.8field-weighted citation impact, top 8% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

40 citing papers in PubMed, 2 syntheses or guidelines pooled it, 105 citations in OpenAlex.

  1. Guideline
  2. Pooled it
  3. Article
  4. Anorexia Nervosa Emerging after Swyer Syndrome DiagnosisJournal of clinical research in pediatric endocrinology · 2026
    Article
  5. Clinical practice guidelines for the management of differences of sex development in Japan.Clinical pediatric endocrinology : case reports and clinical investigations : official journal of the Japanese Society for Pediatric Endocrinology · 2026
    Review
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  13. Review
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 2 institutions in 2 countries.

Annelou L C de VriesFrom the Department of Child and Adolescent Psychiatry (de Vries), Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, the Netherlands; Charité - Universitätsmedizin Berlin (Roehle), Coordinating Center for Clinical Studies, Institute of Biometry and Clinical Epidemiology, Berlin Institute of Health; Klinik fur Kinder- und Jugendmedizin (Marshall, Thyen, Rapp), Universitat zu Lubeck, Germany; Department of Clinical Neuroscience (Frisén), Karolinska Institutet; Child and Adolescent Psychiatry Research Center (Frisén), Stockholm, Sweden; Department of Medical Psychology (van de Grift, Kreukels, Cohen-Kettenis), Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers; Department of Plastic (van de Grift), Reconstructive and Hand Surgery, Center of Expertise on Gender Dysphoria, VU University Medical Center, Amsterdam, the Netherlands; Endocrinologie pediatrique (Bouvattier), Centre de reference des maladies rares du developpement sexuel, Hopital Bicetre, Universite Paris-Sud, Le Kremlin Bicetre, France; Charité - Universitätsmedizin Berlin (Köhler), Klinik fur Padiatrie mit Schwerpunkt Endokrinologie und Diabetologie, Berlin, Germany; and Department of Women's and Children's Health (Nordenström), Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
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
dsd-LIFE Group
The Centers · USBerlin Institute of Health at Charité - Universitätsmedizin Berlin · DE

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveThe aim of the study was to evaluate psychiatric symptoms among 1022 persons with various disorders of sex development (DSDs).

methodsThe 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.

resultsAcross 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.

conclusionsA 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 registrationGerman Clinical Trials Register DRKS00006072.

Indexed as

AnxietyAttention Deficit Disorder with HyperactivityAutism Spectrum DisorderDepressionDisorders of Sex DevelopmentSelf ConceptAdolescentAdultComorbidityCross-Sectional StudiesEuropeFemaleHumansKlinefelter SyndromeMaleMiddle Aged

Identifiers

PMID31232913
PMCPMC6727927
OpenAlexW2949680322

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.