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Quality of life of patients with 46, XX and 46, XY disorders of sex development
Author(s) -
Amaral Rita Cassia,
Inacio Marlene,
Brito Vinicius N.,
Bachega Tania A. S. S.,
Domenice Sorahia,
Arnhold Ivo J. P.,
Madureira Guiomar,
Gomes Larissa,
Costa Elaine M. F.,
Mendonca Berenice B.
Publication year - 2015
Publication title -
clinical endocrinology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.055
H-Index - 147
eISSN - 1365-2265
pISSN - 0300-0664
DOI - 10.1111/cen.12561
Subject(s) - disorders of sex development , multidisciplinary approach , quality of life (healthcare) , population , multidisciplinary team , medicine , pediatrics , endocrinology , gerontology , psychology , environmental health , social science , nursing , sociology
Summary Disorders of sex development ( DSD ) result from abnormalities in the complex process of sex determination and differentiation. An important consideration to guide the assignment of social sex in newborns with ambiguous genitalia is the quality of life (QoL) of these patients in adulthood. The rarity of most DSD conditions makes it difficult to conduct a long‐term follow‐up of affected patients through adulthood. This review of papers on the QoL of DSD patients evaluated in developing and developed countries by qualitative and quantitative instruments revealed a large spectrum of QoL, ranging from very poor to similar to, or even better than, the normal population. A more adequate QoL was found in patients from tertiary centres, indicating that the medical care of DSD patients should be multidisciplinary and carried out by specialized teams.