A group of Brazilian Turner syndrome patients: Better quality of life than the control group

Am J Med Genet A. 2019 Nov;179(11):2196-2201. doi: 10.1002/ajmg.a.61341. Epub 2019 Aug 28.

Abstract

Current literature presents no consensus regarding which aspects influence health-related quality of life (HRQoL) of women with Turner syndrome (TS). The objective of the present study was to compare HRQoL in the TS and control group, using components and domains of the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). Observational, descriptive, and cross-sectional study with 44 women with TS aged between 18 and 30 years (TS group) and 44 healthy women of the same age which were sisters, relatives, or friends of the TS group (control group). A registration form and the SF-36 questionnaire were used to analyze HRQoL in TS in relation to the control group. The TS group presented better scores in the mental component summary and in the role physical, bodily pain, general health, social function, and role emotional domains compared to the control group. This study presented some unexpected results, different from those found in the current literature, showing the possibility of TS patients presenting better coping strategies. It is necessary to develop a specific questionnaire to assess QoL in TS and analyze in great detail which factors may influence the HRQoL of these patients.

Keywords: Turner syndrome; adaptation, psychological; health related quality of life.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Brazil / epidemiology
  • Case-Control Studies
  • Cross-Sectional Studies
  • Female
  • Genetic Testing
  • Humans
  • Male
  • Public Health Surveillance
  • Quality of Life*
  • Turner Syndrome / diagnosis
  • Turner Syndrome / epidemiology*
  • Young Adult