Abstract
Background/AimsOutcome information regarding females with classical congenital adrenal hyperplasia (CAH) have generally suggested poor quality of life (QoL), general maladjustment, problems regarding sexuality, and decreased fertility. The aim of this study was to assess QoL, psychosocial adaptation, and psychosexual characteristics, includingchildhood gender role behavior, gender identity, and sexual orientation in females with CAH.MethodsFemale patients with 21-hydroxylase deficiency CAH were evaluated using a questionnaire with items relating to knowledge of their condition and its therapy; consistency of medical, surgical, and psychological care; childhood friends and play behavior; and genital, pubertal, and sexual development. The subjects’ perception of outcome was compared with family support and adolescent and adult QoL perspectives, including social relationships, self and body image, and gender and sexual issues.ResultsChildhood play and gender characteristics, childhood and adult genital perception, and sexual identity and orientation varied as previously reported. However, most patients indicated good family support, understanding of their condition, good quality medical care, positive self-satisfaction, indices of happiness and body image perception, and satisfaction with their sex lives.ConclusionThe data reported here suggest that overall outcome can be very good for females with CAH and that good outcome appears to relate to quality of care and positive social support.Electronic supplementary materialThe online version of this article (doi:10.1186/s13633-015-0017-z) contains supplementary material, which is available to authorized users.
Highlights
Childhood play and gender characteristics, childhood and adult genital perception, and sexual identity and orientation varied as previously reported
Outcome information is limited regarding females who have the classical form of congenital adrenal hyperplasia (CAH), with reports of poor quality of life (QoL), general maladjustment, problems regarding sexuality, and decreased fertility [1, 2]
Recent studies on QoL and psychosocial adjustment suggest less than satisfactory results; women with
Summary
The aim of this study was to assess QoL, psychosocial adaptation, and psychosexual characteristics, includingchildhood gender role behavior, gender identity, and sexual orientation in females with CAH. The specific aim of this study was comparison of responses to a questionnaire that was derived from general questionnaires in the public domain (Table 1), with items relating to patients’ knowledge of their condition and therapy; consistency of medical, surgical, and psychological care; childhood friends and play behavior; and genital, pubertal, and sexual development, perceptions, and experience
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