Quality of life of patients with 46,XX and 46,XY disorders of sex development

被引:25
|
作者
Amaral, Rita Cassia [1 ]
Inacio, Marlene [1 ]
Brito, Vinicius N. [1 ]
Bachega, Tania A. S. S. [1 ]
Domenice, Sorahia [1 ]
Arnhold, Ivo J. P. [1 ]
Madureira, Guiomar [1 ]
Gomes, Larissa [1 ]
Costa, Elaine M. F. [1 ]
Mendonca, Berenice B. [1 ]
机构
[1] Univ Sao Paulo, Fac Med, Lab Hormonios & Genet Mol LIM 42,Hosp Clin, Unidade Endocrinol Desenvolvimento,Disciplina End, Sao Paulo, Brazil
关键词
CONGENITAL ADRENAL-HYPERPLASIA; 21-HYDROXYLASE DEFICIENCY; FEMALE-PATIENTS; WOMEN; HEALTH; ADULTS; INSTRUMENT; GENITALIA; VERSION;
D O I
10.1111/cen.12561
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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.
引用
收藏
页码:159 / 164
页数:6
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