Quality of life in 70 women with disorders of sex development.
OBJECTIVE
The aim of this study was to assess the quality of life and psychosocial well-being in women with disorders of sex development (DSD).


METHODS
An open case-control study.


METHODS
Social and psychiatric information was collected via a structured interview from 70 Danish women diagnosed with DSD, 70 controls matched on sex, age, and school education, and six women with isolated genital malformations. Quality of life and mental distress were assessed by 'Quality of Life-Assessment of Growth Hormone Deficiency in Adults' (QoL-AGHDA) and three symptom scales from the 'Hopkins Symptom Checklist' (SCL-90-R; i.e. somatization, depression, and anxiety) respectively. For both measures, higher scores reflected poorer outcomes.


RESULTS
Present relationships and having children were less frequent in patients than in controls (P = 0.02 and P < 0.001 respectively). Previous suicidal thoughts (P = 0.002) and a higher frequency of psychological/psychiatric counseling for severe problems (P = 0.06) were more frequently reported in patients than in controls. The mean QoL-AGHDA score was significantly higher in patients than in controls (5.5 vs 2.9; P = 0.002), especially for congenital adrenal hyperplasia (CAH) females (P = 0.01) and virilized 46,XX and 46,XY females (P = 0.04). The total SCL score was higher in patients than in controls (mean 23.2 vs 20.0), reaching significance for anxiety (mean 6.3 vs 4.3, P = 0.03) with highest score in CAH (P = 0.01).


CONCLUSIONS
An impaired quality of life and more affective distress were observed especially in CAH patients and virilized 46,XX and 46,XY females. This may be caused by trauma from distressing diagnostic procedures, the chronic illnesses per se, and psychosocial consequences of the disorders.
Johannsen
Trine H
TH
University Department of Growth and Reproduction, GR-5064, Rigshospitalet, Blegdamsvej 9, DK-2100 Copenhagen, Denmark.
Ripa
Caroline P L
CP
Mortensen
Erik L
EL
Main
Katharina M
KM
D000312:Adrenal Hyperplasia, Congenital / Q000523:psychology*; D000328:Adult; D013734:Androgen-Insensitivity Syndrome / Q000523:psychology*; D001007:Anxiety / Q000175:diagnosis; D016022:Case-Control Studies; D003863:Depression / Q000175:diagnosis; D005260:Female; D023961:Gonadal Dysgenesis, 46,XX / Q000523:psychology*; D006061:Gonadal Dysgenesis, 46,XY / Q000523:psychology*; D019382:Human Growth Hormone / Q000172:deficiency; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012923:Social Class; D014770:Virilism / Q000523:psychology
D019382:Human Growth Hormone