Interdisciplinary care in disorders/differences of sex development (DSD): The psychosocial component of the DSD—Translational research network / What are major recent changes in terms of “standard of care” for various DSD?

A number of major changes have occurred in DSD care in the last decade. Most notably, clinicians have become much more attuned to issues of quality of life, recognizing that providing good cosmetic outcomes or normative gender outcomes are not the same as providing the highest possible quality of life for patients with DSD. Many teams have begun to more actively integrate specialists specifically trained to provide patient education and counseling, including psychologists, social workers, and genetic counselors.

Many clinicians have become persuaded that gender identity arises from a complex developmental process involving prenatal development as well as postnatal development, nature and nurture. Clinicians have become more attentive to prenatal brain development when making gender assignments for children with DSD. (Thus boys born with micropenis are no longer routinely sex reassigned as girls.) They have recognized that gender assignment does not require surgical sex assignment. (So, for example, the Chicago Consensus recognizes that feminizing genitoplasty is not required for girls whose genitals are moderately virilized.)

For certain conditions, surgical interventions are being delayed until puberty, both in order to improve outcomes and to allow the patient to participate in surgical decision making. For examples, although vaginoplasties in the past were routinely performed on infant and toddler girls – requiring their parents to do vaginal dilation as part of the aftercare – most surgeons now concur that vaginoplasties are generally best performed in older girls.

Whereas in the past, some clinicians advocated withholding information about diagnoses from some individuals and families affected by DSD – particularly in cases of girls and women with Y chromosomes – today most clinicians agree that affected individuals and families have the right to know the facts. Many acknowledge that patients are better off when treated with honesty, since withholding of information often conveys an element of shame that ultimately harms the patient meant to be protected.

More and more clinicians are actively referring to and working with support groups for DSD. They have recognized that peer support provides a level of psychological and emotional comfort that is generally unmatched in the clinical setting.