UC Irvine

Individuals who identify as transgender and individuals who have been diagnosed with a disorder of sex development (DSD) likely have different challenges and experiences with the medical world. Both individuals with DSD as well as transgender individuals can be perceived as “gender non-conforming,” although their non-conformity would be attributed to differing etiologies. This study was designed to collect feedback from both of these groups in order to clarify similarities and differences with respect to satisfaction with healthcare, access to Medical Genetics and Genetic Counseling, diagnosis disclosure, and perceived stigma. By forming a better understanding of these two groups, we can begin to improve medical care and how they are perceived by healthcare professionals. With this aim, an anonymous survey was distributed online and responses from 104 eligible individuals analyzed.

Using the patient satisfaction questionnaire (PSQ-18), our study population reported lower general healthcare satisfaction than other previously-studied groups. Fewer than one-third of all participants with DSD reported having seen a medical geneticist or genetic counselor, even though a Medical Genetics evaluation is indicated in most, if not all, cases of DSD. Forty percent of all survey respondents reported that a healthcare practitioner had been unwilling or unable to treat them due to their gender or medical condition (eg: DSD). The results of this study indicate the need for further broad educational and sensitivity efforts in healthcare organizations. Additionally, further improvement efforts are needed in order to increase access to Medical Genetics and Genetic Counseling for individuals with DSD.