Background
Turner syndrome (TS) is a genetic condition involving the X-chromosome with a broad phenotypic spectrum. In contrast to the medical conditions, socio-economic factors are less understood. Our goal was to evaluate the socio-economic status (SES) among women with TS in a broad European cohort, and to look for possible associated factors.
Methods
This study was part of the multicenter dsd-LIFE study. We evaluated SES (education, occupation and satisfaction with income) using patient-reported outcomes. Furthermore, information on karyotype, age at diagnosis, comorbidity, marital status, social integration and stigmatization was collected. Reference data on SES were retrieved from the European Social Survey. Linear- and logistic regression were used to compare SES of patients with TS to controls, and to analyze possible associated factors.
Results
Information of 328 women with TS was available. They showed a high level of education, occupation and satisfaction with income. In contrast, less patients with TS were living together or married and less social activities were reported, compared to the reference population. The latter factors were more strongly associated with SES than medical factors. The unemployment rate was the highest in TS women aged 26-30 years, and a low educational status was associated with a later age at diagnosis. No major differences in SES were found between the karyotype groups.
Conclusions
In general, the SES in women with TS is comparable to the reference population, although they are less frequently living together with a partner or having social activities. More attention is needed for (early) psychosocial screening and support, and strategies to allow for earlier diagnosis of TS are necessary.