Abstract
Background: Patients with a disorder of sex development (DSD) are born with atypical genitals or may develop atypical genitals and atypical body appearance, if left untreated. Health related quality of life (HRQoL) was assessed in Indonesian patients to whom diagnostic procedures and medical intervention had been delayed.Method: Comparison of 118 patients born with DSD, aged 6–41 years (60 children, 24 adolescents, and 34 adults) and 118 healthy control subjects matched for gender, age, and residential setting. HRQoL was measured using a translation of the TACQOL/TAAQOL.Results: According to parental and children's report, children with DSD reported more problems in social functioning and had less positive moods. Girls, in particular, reported problems in cognitive functioning. Adult patients reported more depressive moods, especially women, who reported more anger. No differences were found between in the adolescent groups.Conclusion: The data suggest that Indonesian children with DSD experienced more problems in social contact than non-affected Indonesian children, whereas Indonesian adults with DSD suffered from negative emotions more often than non-affected Indonesians. These findings on HRQoL are in line with findings on emotional functioning.
Highlights
In patients with a disorder of sex development (DSD), the internal and external sex organs are developed atypically
We aimed to investigate health related quality of life (HRQoL) in Indonesian patients with DSD who recently came under clinical management
Comparison of Indonesian children, adolescent, and adult patients with DSD to healthy control subjects matched by age, gender, and residential setting on Health related quality of life (HRQoL)
Summary
In patients with a disorder of sex development (DSD), the internal and external sex organs are developed atypically. Patients may be born with an atypical external genital and/or may develop an ambiguous physical appearance later in life. In the past 20 years, several studies on quality of life in patients with DSD have been conducted (3–9). Studies performed in Western patients revealed inconclusive outcomes, from a significantly reduced quality of life to a reported quality of life. Patients with a disorder of sex development (DSD) are born with atypical genitals or may develop atypical genitals and atypical body appearance, if left untreated. Health related quality of life (HRQoL) was assessed in Indonesian patients to whom diagnostic procedures and medical intervention had been delayed
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have