ISSN 1662-4009 (online)

ESPE Yearbook of Paediatric Endocrinology (2020) 17 6.14 | DOI: 10.1530/ey.17.6.14


To read the full abstract: Psychosom Med. 2019, Sep; 81: 629–40. doi: https://www.ncbi.nlm.nih.gov/pubmed/31232913

The cross-sectional European dsd-LIFE questionnaire study assessed self-reported health outcomes, including psychiatric diagnoses and symptoms, sexuality (1) and body image (2) in 1040 adolescents and adults with DSD from six European countries. It compared mental health among DSD diagnostic groups and to the general population and identified determinants for poor mental health. Of all diagnostic groups, men with Klinefelter syndrome were the most vulnerable for poor mental health outcomes: They had the highest levels of anxiety and depression, exhibited most often autism and attention deficits, and had most often suicidal thoughts. Compared to the general population, participants with DSD conditions with androgen effects had more severe anxiety and depression, men with Klinefelter Syndrome and CAH women had more autism symptoms, and in all DSD diagnostic groups except Turner Syndrome, suicidal tendencies were higher. Reluctance to talk about their condition, lower self-esteem, poor body image and poor satisfaction with medical care were determinants of poorer mental health outcomes, and their impact differed between aspects of mental health and diagnostic groups. Participants reported impaired sex life (1), and female participants were more likely to report incomplete and dissatisfaction with their breast development than women from the normal population (2).

Psychological counseling in DSD care should focus on improving these predictive factors, individualized on the specific DSD condition. Specialized psychological care and a multidisciplinary approach for DSD persons plays a central role to help them improve acceptance of their body, build up self-esteem, and to achieve a good quality of life.

References:

1. Sexuality in Adults with Differences/Disorders of Sex Development (DSD): Findings from the dsd-LIFE Study. Kreukels BPC, Cohen-Kettenis PT, Roehle R, van de Grift TC, Slowikowska-Hilczer J, Claahsen-van der Grinten H, Linden Hirschberg A, de Vries ALC, Reisch N, Bouvattier C, Nordenstrom A, Thyen U, Kohler B, Group O. J Sex Marital Ther. 2019; 45: 688–705; DOI 10.1080/0092623X.2019.1610123, PMID 31034334. https://www.ncbi.nlm.nih.gov/pubmed/ 31034334.

2. Breast development and satisfaction in women with disorders/differences of sex development. Van de Grift TC, Kreukels BPC. Hum Reprod. 2019, Dec 1; 34: 2410-7; DOI 10.1093/humrep/dez230, PMID 31774116.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6936743/pdf/dez230.pdf

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