Socioeconomic parameters and mortality in Turner syndrome

Abstract

Background: Turner syndrome (TS) is characterized by hypogonadism, short adult height, increased morbidity and mortality, contrasted by self-reported normal quality of life and perception of health. Small studies have indicated a similar level of education compared with the background population. Aim: To study the socioeconomic profile in TS and the impact of these factors on mortality. Materials and methods: Register study using Danish nationwide registries. Nine hundred and seventynine TS females and 94 850 controls were included. Information concerning cohabitation, motherhoods, level of education (bachelor degree), income, retirement, and death were obtained. One hundred and three TS and 5989 controls died during the study period. For the socioeconomic parameters, median age at first relevant episode was calculated. Income was analyzed using conditional logistic regression and the other parameters using Cox regression. Results: In comparison with controls, TS had significantly fewer partnerships (hazard ratio (HR): 0.45), fewer motherhoods (HR: 0.18), and retired earlier (HR: 1.8). After the diagnosis of TS, the risk of retiring was increased. Educational attainment (HR: 1.0) as well as risk of unemployment was similar. Before the age of 30, low income was significantly more frequent; hereafter, it was similar to controls. Mortality was significantly increased (HR: 2.9) and slightly lower after adjustment for cohabitation and education (HR: 2.7). Conclusions: A divergent socioeconomic profile is apparent, with a reduced proportion of TS persons finding a partner and becoming mothers. The educational level was similar to controls. The increased mortality in TS was not materially affected after adjustment for cohabitation and education.

High Levels of Education and Employment Among Women with Turner Syndrome

“…Finally, a recent epidemiology study that interrogated national registry data for all Danish citizens reports that 65% of women with TS (not research volunteers) had a baccalaureate and similar levels of employment compared with the general Danish population. 22 These observations, taken together, support the view that these present observations are indeed representative of women with TS in general.…”

“…These data are consistent with the recent Danish study. 22 This cannot be viewed primarily as social cognition issue, since most women with TS have infertility associated with premature ovarian insufficiency and one of the major factors promoting the institution of marriage, until recently, was the production and protection of children. Among women with TS in this cohort, the likelihood of marriage increased progressively with age.…”

Mortality and socioeconomic status in adults with childhood onset GH deficiency (GHD) is highly dependent on the primary cause of GHD

“…Thus, the advantage is a greater number of events, and the increased numbers of controls enhance the possibility to identify rare events. We have recently presented socioeconomic and mortality data on patients with Klinefelter syndrome and in comparison the impact of the primary cause of hypopituitarism/GHD must be seen as more severe on all studied aspects (18), and likewise the impact on mortality is more severe than seen among patients with Turner syndrome (30,31), which emphasizes that CO-GHD is a very severe condition, with the important exception of the small group with idiopathic GHD which do better than the other GHD groups. The latter finding is positive indeed and expected pathogenetically, due to the absence of concomitant illnesses, with regards to the GHD diagnosis.…”

Care of girls and women with Turner syndrome: beyond growth and hormones

“…More women with TS than age-matched control women remain unmarried and they report fewer social contacts (114). Lower psychosocial well-being seems to correlate with sex hormone deficiency but also with reported learning difficulties at school in the past (113).…”