Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Jan 23:5:100030.
doi: 10.1016/j.cpnec.2021.100030. eCollection 2021 Feb.

Socioeconomic status in patients with Turner syndrome

Iris D Noordman  1 , Janiëlle Aem van der Velden  1 , Henri Jlm Timmers  2 , Nicole Reisch  3 , Annette Richter-Unruh  4 , Catherine Pienkowksi  5 , Nel Roeleveld  6 , Hedi L Claahsen-van der Grinten  1 ; dsd-LIFE group
Affiliations

Socioeconomic status in patients with Turner syndrome

Iris D Noordman et al. Compr Psychoneuroendocrinol. .

Abstract

Background: Turner syndrome (TS) is a genetic condition with a broad phenotypic spectrum. In contrast to the medical conditions, socioeconomic factors are not well understood. Our goal was to evaluate the socioeconomic status (SES) among women with TS in a European-wide cohort, and to look for possible associated factors.

Methods: This study was part of the multicenter dsd-LIFE study, including 328 women with TS. We evaluated SES (education, occupation and income) using patient-reported outcomes. Furthermore, information was collected on karyotype, age at diagnosis, comorbidity, marital status, social integration and discrimination. Reference data on SES were retrieved from the European Social Survey. Linear and logistic regression analyses were performed to compare SES of the study population with the reference population, and to analyze possible associated factors.

Results: Women with TS showed a high level of education, employment status and satisfaction with income. In contrast, fewer women were living together and fewer social activities were reported compared with 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, while a low education was associated with a later age at diagnosis. No major differences in SES were found among the different karyotype groups.

Conclusions: The SES in women with TS was generally comparable with the reference population, although they were less frequently living with a partner or having social activities. More attention is needed for (early) psychosocial screening and support, and strategies for earlier diagnosis of TS are necessary.

Keywords: Karyotype; Socioeconomic status; Turner syndrome.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Figures

Fig. 1
Fig. 1
Educational level, occupational status and satisfaction with income in women with Turner syndrome compared with an age-matched European reference population. ∗ORadj (95%CI) excludes 1, TS ​= ​women with Turner syndrome, Ref ​= ​European reference population.
See this image and copyright information in PMC

References

    1. Gravholt C.H., Andersen N.H., Conway G.S., Dekkers O.M., Geffner M.E., Klein K.O., Lin A.E., Mauras N., Quigley C.A., Rubin K., Sandberg D.E., Sas T.C.J., Silberbach M., Soderstrom-Anttila V., Stochholm K., van Alfen-van derVelden J.A., Woelfle J., Backeljauw P.F., Grp I.T.S.C. Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting. Eur. J. Endocrinol. 2017;177:G1–G70. - PubMed
    1. Hong D., Scaletta Kent J., Kesler S. Cognitive profile of Turner syndrome. Dev Disabil Res Rev. 2009;15:270–278. - PMC - PubMed
    1. Liedmeier A., Jendryczko D., van der Grinten H.C., Rapp M., Thyen U., Pienkowski C., Hinz A., Reisch N. Psychosocial well-being and quality of life in women with Turner syndrome. Psychoneuroendocrinology. 2019;113 - PubMed
    1. van den Hoven A.T., Bons L.R., Dykgraaf R.H.M., Dessens A.B., Pastoor H., de Graaff L.C.G., Metselaar M.R., Kneppers-Swets A., Kardys I., Mijnarends H., Zweerus F., Hazelzet J.A., Utens E.M.W.J., van den Bosch A.E., Roos-Hesselink J.W. A value-based healthcare approach: health-related quality of life and psychosocial functioning in women with Turner syndrome. Clin. Endocrinol. 2020;92:434–442. - PMC - PubMed
    1. Last J.M. Dictionary of public health. Eur. J. Publ. Health. 2002;12 308-308.

LinkOut - more resources