Socioeconomic status in patients with Turner syndrome

Iris D Noordman; Janiëlle Aem van der Velden; Henri Jlm Timmers; Nicole Reisch; Annette Richter-Unruh; Catherine Pienkowksi; Nel Roeleveld; Hedi L Claahsen-van der Grinten; dsd-LIFE group

doi:10.1016/j.cpnec.2021.100030

Socioeconomic status in patients with Turner syndrome

Compr Psychoneuroendocrinol. 2021 Jan 23:5:100030. doi: 10.1016/j.cpnec.2021.100030. eCollection 2021 Feb.

Authors

Iris D Noordman¹, Janiëlle Aem van der Velden¹, Henri Jlm Timmers², Nicole Reisch³, Annette Richter-Unruh⁴, Catherine Pienkowksi⁵, Nel Roeleveld⁶, Hedi L Claahsen-van der Grinten¹; dsd-LIFE group

Affiliations

¹ Department of Pediatric Endocrinology, Amalia Children's Hospital, Radboud University Medical Center, Nijmegen, the Netherlands.
² Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands.
³ Department of Endocrinology, Medizinische Klinik IV, Klinikum der Universität München, München, Germany.
⁴ Kinderendokrinologie und Diabetologie, Universitätsklinikum Ruhr-Universität Bochum, Kinderklinik, Bochum, Germany.
⁵ Reference Center for Rare Gynecological Pathologies, Children Hospital, Toulouse, France.
⁶ Department for Health Evidence, Radboud University Medical Center, Nijmegen, the Netherlands.

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.