Emotional and behavioral problems in late-identified Indonesian patients with disorders of sex development

Abstract

Indonesian patients with DSD who were untreated for most of their lives suffered more emotional and behavioral problems than matched controls. Differences and similarities between our findings and observations in patients from Western countries will be discussed.

Health‐related quality of life and psychological well‐being in adults with differences/disorders of sex development

“…Reviews on QoL and psychological outcomes for adults with DSD cited nine original articles from 1995 to 2004 and fifteen from 2005 to 2014 . In 2015, five novel studies were published . Although these studies address QoL and/or psychological well‐being of individuals with DSD, the results varied greatly.…”

Global Application of Assessment of Competencies of Paediatric Endocrinology Fellows in the Management of Differences of Sex Development (DSD) Using the ESPE e-learning.org Portal

“…In some cultures, fertility is extremely important, as it affects 'marriageability' for women. Egg cell donation may not be allowed and adoption might be uncommon Note that the total number of acknowledgements is greater than the total number of fellows because fellows responded to feedback from two to three experts per question [15][16][17]. A religious official may play a crucial role in management in terms of decision making and with respect to openness on informing family and friends [16,17].…”

“…Egg cell donation may not be allowed and adoption might be uncommon Note that the total number of acknowledgements is greater than the total number of fellows because fellows responded to feedback from two to three experts per question [15][16][17]. A religious official may play a crucial role in management in terms of decision making and with respect to openness on informing family and friends [16,17]. Options regarding genital surgery involving gonadectomy, hysterectomy or fertility preservation procedures may be subject to religious recommendations [18].…”

“…Furthermore, recommendations for genetic counselling and transition of care to an adult endocrinologist or gynaecologist are lacking. Several experts mentioned the association with transgenderism or homosexuality, which in some cultural/religious background is condemned [16,17]. It is of interest to note that the fellows in their first reply to the open questions did not mention cultural, religious or regional aspects.…”

Misrepresentation of Evidence Favoring Early Normalizing Surgery for Atypical Sex Anatomies: Response to Baratz and Feder (2015)

“…Recently, two studies have been published from resource-poor countries, where genital surgery for intersex patients is not widely available. A study from Indonesia showed that the intersex patients without medical care did worse than those with medical care (Ediati et al, 2015), but also this article did not disentangle genital surgery per se from other aspects of medical care. A Chinese study of genital surgery in intersex patients reported that''99of133adolescents(74 %)and26of33adults(78 %)thought that it was late to receive surgical intervention'' (Zhang et al, 2013).Thus,inthis study,thedatafromadolescentsseemtoimply a preference for surgery prior to the age of consent.…”