Individuals with KS in our study seem to be the most vulnerable group. Not only were their autistic and attention difficulties high compared to the other variations but also their levels of depression and anxiety. Their self-reported anxiety, depression, ADHD and autism symptom levels were also higher when compared to the French reference population or population prevalence rates. Another paper on the general health status in the same dsd-LIFE cohort already showed that the participants with KS not only reported highest percentages of having physical problems but also psychiatric health problems (45%) and a lifetime psychiatric diagnosis (59%). Clearly, the stresses and strains of this most prevalent chromosomal aberration are extremely high.
Since the dsd-LIFE project aimed at improving the quality of life and care for people with VSD, we tried to identify possible factors associated with mental health. Shame and stigma around XY-VSD and XX-VSD conditions have been found by some to negatively influence wellbeing. In line with these studies, we found much discomfort and a reluctance to talk about the diagnosis to other people (55-70%). This shows that having a VSD diagnosis that may influence appearance, gender role, fertility, and sexuality often is still perceived as a taboo that is better kept to oneself.
Particularly in persons with the chromosomal VSD conditions TS and KS, shame was significantly associated with depressive symptoms, showing the relevance of addressing shame in clinical care. Clinicians in multidisciplinary VSD teams should therefore not only give medical advice but also support the care seekers to find a satisfying coping style with the condition. Through open and proactive communication, affected individuals may gain a sense of control and become empowered with regard to their conditions. For that reason, it is important that mental health providers are part of the VSD team. Another form of support can take place through peer counselling, that connects care seekers with persons with similar conditions and their families. Finally, educational level was correlated with autistic symptoms in participants with TS, KS and CAH. Indeed, individuals with TS and KS can have specific learning difficulties that deserve special attention to promote their psychological well- being.
The XXY Project 