46,XY intersex individuals: phenotypic and etiologic classification, knowledge of condition, and satisfaction with knowledge in adulthood.

Claude J. Migeon, Amy B. Wisniewski, Terry R. Brown, John A. Rock, Heino F L Meyer-Bahlburg, John Money, Gary Berkovitz

Research output: Contribution to journalArticle

66 Citations (Scopus)

Abstract

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.

Original languageEnglish
JournalPediatrics
Volume110
Issue number3
StatePublished - Sep 1 2002
Externally publishedYes

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Disorders of Sex Development
Female Genitalia
Genitalia
History
Androgen-Insensitivity Syndrome
Education
Karyotype
Medical Records
Chromosomes
Interviews

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

Cite this

Migeon, C. J., Wisniewski, A. B., Brown, T. R., Rock, J. A., Meyer-Bahlburg, H. F. L., Money, J., & Berkovitz, G. (2002). 46,XY intersex individuals: phenotypic and etiologic classification, knowledge of condition, and satisfaction with knowledge in adulthood. Pediatrics, 110(3).

46,XY intersex individuals : phenotypic and etiologic classification, knowledge of condition, and satisfaction with knowledge in adulthood. / Migeon, Claude J.; Wisniewski, Amy B.; Brown, Terry R.; Rock, John A.; Meyer-Bahlburg, Heino F L; Money, John; Berkovitz, Gary.

In: Pediatrics, Vol. 110, No. 3, 01.09.2002.

Research output: Contribution to journalArticle

Migeon CJ, Wisniewski AB, Brown TR, Rock JA, Meyer-Bahlburg HFL, Money J et al. 46,XY intersex individuals: phenotypic and etiologic classification, knowledge of condition, and satisfaction with knowledge in adulthood. Pediatrics. 2002 Sep 1;110(3).
Migeon, Claude J. ; Wisniewski, Amy B. ; Brown, Terry R. ; Rock, John A. ; Meyer-Bahlburg, Heino F L ; Money, John ; Berkovitz, Gary. / 46,XY intersex individuals : phenotypic and etiologic classification, knowledge of condition, and satisfaction with knowledge in adulthood. In: Pediatrics. 2002 ; Vol. 110, No. 3.
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