ESPE Abstracts

Background: In Indonesia clinical management of DSD is challenged by limited knowledge and diagnostic and treatment facilities.Objective and hypotheses: We investigated patients’ experiences of being raised in physical ambiguity and doubts about gender and it’s consequences on gender development, social stigmatization, and quality of life.Method: 118 Indonesian patients, age 6–41, with 46,XX DSD (n=27), 46,X...

Keywords: Congenital Adrenal Hyperplasia, Parent’s experience, Focus Group DiscussionBackground: Congenital Adrenal Hyperplasia (CAH) leads to many unseen social burdens for parents, including ambiguous genitalia (in girls), lifelong use of medication, including stress dosing, social and psychological pressure, and stigmatization. This study aimed to investigate various lived experiences of parents caring for their...

Background: Classic Congenital Adrenal Hyperplasia (CAH) needs life-long treatment of glucocorticoids. Compliance with long-term medication is still challenging, particularly in developing countries. However, there has been no prospective study about the strategy to improve compliance in CAH and its relationship with hormonal control and quality of life (QoL) in CAH, especially in underprivileged countries such as Indonesia. This study aimed to determine the r...