The QoL of TS patients appears to be compromised, but existing data regarding the relations among height, puberty, and GH and QoL are still controversial. Although these factors should be carefully considered in TS patients, it was not possible to determine whether they have a significant relation with the QoL of TS patients.
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. K E Y W O R D S adaptation, psychological, health related quality of life, Turner syndrome
Classically, in Brazil, children with severe neurological impairment have been submitted to intervention methods focused on the improvement of the overall development in controlled clinical environments. However, it has been questioned if the isolated clinical treatment results in important gains in the child's performance in various environments (home, school, community). The Mobility Opportunities Via Education (MOVE(r)) program is a functional approach designed to assess and treat children with severe disabilities. The objective of this study was to understand the perception of the teachers and assistants regarding the MOVE(r) approach in a special education school in the city of Paulínia (SP). This research is a result of a qualitative case study conducted by using semi-structured interviews and categorical data analysis. With the application of the MOVE(r) program in the school, the professionals started having a more human view while taking care of the patients. The importance of motor learning in natural environments, more motivation in the children and improvement in their motor development were emphasized. MOVE(r) was efficient in the perception of the professionals, favoring more motivation in the children and a more human approach with children with motor disabilities.
Objective: This study aimed to analyze if anthropometric factors and physical appearance are associated to QoL in Turner syndrome (TS). Materials and methods: Observational, analytical, and cross-sectional study. The SF-36 was applied along with an additional questionnaire regarding specific characteristics of TS. Results: There were no differences in quality of life (QoL) in TS women regarding median height and appropriate height according to parental target height, however, participants satisfied and who did not desire to change their height had better scores in the mental health and role emotional domains than those not satisfied and desired to change it. When comparing participants who were or were not bothered by physical appearance, the results showed that those not bothered by physical appearance had a better score in the vitality and social function domains. Considering patients who did or did not desire to change physical appearance, those who did not want to change their physical appearance had higher scores in the mental component and in the social function and mental health domains of the SF-36. Conclusion: This study indicated that anthropometric factors and physical appearance may possibly be associated to QoL in TS, and also emphasizes the need to develop and validate an official questionnaire regarding specific TS characteristics in order to assess in more detail how specific characteristics of TS interfere with their QoL.
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