Background: In Indonesia clinical management of DSD is challenged by limited knowledge and diagnostic and treatment facilities.
Objective and hypotheses: We investigated patients experiences of being raised in physical ambiguity and doubts about gender and its consequences on gender development, social stigmatization, and quality of life.
Method: 118 Indonesian patients, age 641, with 46,XX DSD (n=27), 46,XY DSD (n=77), and chromosomal DSD (n=14). 118 control subjects matched for gender, age, and living area. Questionnaires for gender behaviour and identity, social stigmatization, emotional problems, and quality of life were translated or developed. Reference data were collected in 5024 adults, children, adolescents and parents (web-based and paper and pencil surveys). Construct validity and reliability of questionnaires were tested with principal component analysis and Cronbach alpha procedures. Non-parametric and parametric statistical tests were applied for group comparisons.
Results: Construct validity and reliability were sufficient for all measures. Gender change was observed in 7% (611 years), 8% (1217 years), and 44% (>18 years) of patients. Gender identity confusion was seen in girls with DSD (611 years, P=0.004 and 1217 years, P=0.01). Adult men with DSD reported past cross gender behaviour (P=0.01) and identification (P=0.01) that disappeared after they changed gender (F/M). Children with genital ambiguity (P<0.006) and cross gender behaviour (P<0.001); adults with physical ambiguity (P=0.001), and adults who changed gender (P<0.03) suffered social stigmatization. Social stigmatization elicited depression and withdrawal in girls (P=0.002), women (P=0.009) and youngsters who had changed gender (P=0.02). Parents reported emotional problems in their sons with DSD (P=0.05); adult men with DSD reported anxiety/depression (P=0.04), women with DSD reported social isolation (P=0.02). On quality of life, parents reported more problems in social functioning (P=0.001) in children with DSD.
Conclusion: High percentages of patients with progressive masculinization changed gender. Patients experienced social stigmatization and related emotional problems. Early identification and referral, providing medical care, patient education and enhancement of coping abilities will improve patients wellbeing and should be promoted among Indonesian health practitioners.
01 Oct 2015 - 03 Oct 2015