Quality-of-life studies in patients with ambiguous genitalia

No published study to date has adequately addressed the quality of life (QOL) of intersexuals, although three studies reviewed some of these aspects. A tool specifically for studies in intersexuality is being developed. A pilot survey tested by this author using questions from a population-specific, standardized QOL survey tool was evaluated by use on a small sampling of an intersexual patient test population. The group comprised ten adult intersexuals with an average age of 34.2 years (range: 22-47 years). Survey results disclosed that all considered themselves healthy and physically active. Family relationships were described as generally good, though in discussion most showed some family problems that centered on gender issues. Six had many friends, three had some, and one had few. Eight of the ten had experienced orgasm. Only two felt they trusted doctors. All but one were partially or completely satisfied with their overall physical appearance. Those who had surgery were distressed by the appearance of their genitals, some expressing complete dissatisfaction. With development of sensitive survey tools reflecting the attitudes and concerns of this special population, important issues relating to intersexuality can be addressed.