Gender assignment and medical history of individuals with different forms of intersexuality: evaluation of medical records and the patients' perspective.
BACKGROUND
Until now, there are only few studies that focus on the specific treatment experiences of people with intersexuality and evaluate their outcome in terms of psychological, physical, and social well-being. Further, the presentation of the patients' perspective is often neglected in research.


OBJECTIVE
Overview of preliminary results of the Hamburg-Intersex-Study on gender assignment and medical history of adult subjects with intersexuality (disorders of sex development), as well as the patients retrospectively stated thoughts and feelings regarding these interventions.


METHODS
Medical records from participants of the study were analyzed. The subjective attitudes and evaluation of the treatment measures were assessed with a self-constructed questionnaire. Data on psychological well-being were measured with the Brief Symptom Inventory.


METHODS
In total, 37 adult participants (mean age 30.6 years) with following diagnosis were included: congenital adrenal hyperplasia, complete and partial androgen insensitivity syndrome, gonadal dysgenesis and disturbances of the androgen biosynthesis, such as 5 alpha reductase deficiency and 17 beta hydroxysteroid deficiency.


RESULTS
The majority of participants had (often multiple) genital surgery to correct the appearance of their genitalia and/or to enable sexual functioning. The diagnostic groups differ not only in amount and invasiveness of experienced surgical and medical treatment but also in the subjective and retrospective evaluation of the treatment measures and in the amount of reported psychological distress.


CONCLUSIONS
Many subjects stated to have experienced the medical procedures and care very negatively, whereby the aspects of secrecy, untruthfulness, and concealment were stated as most difficult and burdening.
Brinkmann
Lisa
L
Institute for Sex Research and Forensic Psychiatry, Center for Psychosocial Medicine, University Hospital Hamburg-Eppendorf, D-20246 Hamburg, Germany.
Schuetzmann
Karsten
K
Richter-Appelt
Hertha
H
D000293:Adolescent; D000312:Adrenal Hyperplasia, Congenital / Q000523:psychology; D000328:Adult; D013734:Androgen-Insensitivity Syndrome / Q000523:psychology; D001294:Attitude to Health; D012734:Disorders of Sex Development / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D005260:Female; D005783:Gender Identity; D006059:Gonadal Dysgenesis / Q000523:psychology; D006801:Humans; D008297:Male; D008499:Medical Records; D008875:Middle Aged; D017060:Patient Satisfaction; D012189:Retrospective Studies; D012720:Severity of Illness Index; D012725:Sexual Behavior / Q000523:psychology*; D011795:Surveys and Questionnaires