Psychosocial Factors in Disorders of Sex Development in a Long-Term Perspective: What Clinical Opportunities are there to Intervene?

被引:14
作者
Nordenstrom, A. [1 ]
机构
[1] Karolinska Inst, Karolinska Univ Hosp, Dept Womens & Childrens Hlth, Pediat Endocrinol Q2 04, S-17176 Stockholm, Sweden
关键词
DSD; quality of life; congenital adrenal hyperplasia; CONGENITAL ADRENAL-HYPERPLASIA; QUALITY-OF-LIFE; PSYCHOLOGICAL ADJUSTMENT; HEALTH-STATUS; CHILDREN; ADULTS; WOMEN; SATISFACTION; DEFICIENCY; PARENTS;
D O I
10.1055/s-0034-1398562
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Disorders or differences in sex development (DSD) comprise a wide spectrum of severity. The overall goal for the treatment and care is good quality of life but current knowledge concerning the psychosocial situation and health related quality of life for patients with different forms of DSD is limited. Follow-up studies have often focused on surgical results, sexual function, and psychosexual outcome and indicated unsatisfactory results in many cases. Epidemiological studies show less than optimal psychosocial situation for some of the diagnostic groups. Studies indicate that access to psychological support and understandable information is important for the outcome. Hormonal and surgical treatments are improving and new and better ways to strengthen the patient's ability to cope with the situation are needed. In a well-functioning multidisciplinary team, the patient's and family's needs should be identified. Tools to accomplish this can be developed. The care and our knowledge about disorders of sex development have developed considerably during the last decade. These are small patient groups with rare conditions that require specialized, highly qualified care in all aspects: medical, surgical, and psychological. It is important that changes in treatment practice are continuously evaluated.
引用
收藏
页码:351 / 356
页数:6
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