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Controversy concerning the most appropriate treatment guidelines for intersex children currently exists. This is due to a lack of long-term information regarding medical, surgical, and psychosexual outcome in affected adults. We have assessed by questionnaire and medical examination the physical and psychosexual status of 14 women with documented complete androgen insensitivity syndrome (CAIS). We have also determined participant knowledge of CAIS as well as opinion of medical and surgical treatment. As a whole, secondary sexual development of these women was satisfactory, as judged by both participants and physicians. In general, most women were satisfied with their psychosexual development and sexual function. Factors reported to contribute to dissatisfaction were sexual abuse in one case and marked obesity in another. All of the women who participated were satisfied with having been raised as females, and none desired a gender reassignment. Although not perfect, the medical, surgical, and psychosexual ...

Objectives. The objective of this study was to identify and study adults who have a 46,XY karyotype and presented as infants or children with variable degrees of undermasculinization of their genitalia (female genitalia, ambiguous genitalia, or micropenis). Participants’ knowledge of their condition, satisfaction with their knowledge, and desire for additional education about their intersex condition were assessed. Methods. Participants were classified according to the cause underlying their intersex condition based on review of medical and surgical records. Knowledge of medical condition, satisfaction with that knowledge, and desire for additional education were assessed with a written questionnaire and a semistructured interview. Results. Patients were ineligible for recruitment because of death (9%), because of developmental delay (12%), or because they were not located (27%). Among the 96 eligible patients, 78% participated. Approximately half of the men (53%) and women (54%) exhibited a good understanding of their history. Fewer women who have a 46,XY chromosome complement and were born with female genitalia were informed about their intersex condition (36% with complete androgen insensitivity syndrome) than were women who were born with masculinized genitalia such as micropenis (80%) or ambiguous genitalia (72%). More women (66%) than men (38%) were satisfied with their knowledge of their medical and surgical history. Conclusions. Almost half of the patients, reared male or female, were neither well informed about their medical and surgical history nor satisfied with their knowledge.

Cerebral function was assessed in 30 patients undergoing coronary artery bypass grafting in whom a reduction in both flow rate (

In 2002 a consensus statement pertaining to the management of classical congenital adrenal hyperplasia due to 21-hydroxylase deficiency was jointly produced by the Lawson Wilkins Pediatric Endocrine Society and the European Society of Pediatric Endocrinology. One of the recommendations of this consensus was that centers should maintain multidisciplinary teams for providing care and support to these patients and their families. However, the specifics for how this should be accomplished were not addressed in the original consensus statement. Here we interpret and translate the 2002 consensus statement recommendations into medical, surgical and mental health protocols. Additionally, we provide preliminary evidence that such protocols result in improved care and support for patients and families.

Background The current study sought to compare levels of overprotection and parenting stress reported by caregivers of children with disorders of sex development at four different developmental stages. Methods Caregivers (N = 59) of children with disorders of sex development were recruited from specialty clinics and were asked to complete the Parent Protection Scale and Parenting Stress Index/Short Form as measures of overprotective behaviors and parenting stress, respectively. Results Analyses of covariance (ANCOVAs) were conducted to examine differences between caregiver report of overprotection and parenting stress. Results revealed that caregivers of infants and toddlers exhibited more overprotective behaviors than caregivers of children in the other age groups. Further, caregivers of adolescents experienced significantly more parenting stress than caregivers of school-age children, and this effect was driven by personal distress and problematic parent-child interactions, rather than having a difficult child. Conclusions These results suggest that caregivers of children with disorders of sex development may have different psychosocial needs based upon their child's developmental stage and based upon the disorder-related challenges that are most salient at that developmental stage.

In Indonesia clinical management of Disorders of Sex Development (DSD) is challenged by limited knowledge and limited diagnostic and treatment facilities. Prior to this study, most patients remained untreated and grew up with ambiguous bodies and doubts about their gen-der. We investigated patients’ experiences of being raised in ambiguity. 118 Indonesian patients, ages 6 – 41, with 46XX DSD (n=27), 46XY DSD (n=77) and chromosomal DSD (n=14) were compared to 118 control subjects matched for gender, age, and living area. Questionnaires for gen-der identity, gender role behavior and social stigmatiza-tion were translated or designed. The psychometric properties were satisfactory. For patient and control group comparisons, Mann-Whitney U and Fisher’s Exact tests were applied. The results showed that 7% of the children, 8% of the adolescents and 44% of the adults changed gender, parti-cularly non-diagnosed and non-treated patients with 46XY DSD (81%). 95% of the patients changed gender from female to male, including untreated patients with 46,XX CAH-SV. Compared to control groups, cross-gender role behavior was seen in young girls with 46XX CAH-SV (p=.047) and adolescent girls with different types of DSD (p=.01). In girls with DSD, confusion with gender identity was seen (young girls p=.004; adolescent girls p=.01). Adult men reported past cross-gender role behavior (p=.01) and past problems in gender identification (p=.01) prior to female-to-male gender change. Children with genital ambiguity (p