Cardiovascular Care of Turner Syndrome Women in Germany: Where Do We Stand?-Results from an Online Patient Survey.
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ABSTRACT:
SUBMITTER: Bacova M
PROVIDER: S-EPMC8955387 | biostudies-literature | 2022 Mar
REPOSITORIES: biostudies-literature
Publications
Cardiovascular Care of Turner Syndrome Women in Germany: Where Do We Stand?-Results from an Online Patient Survey.
Bačová Martina M Li Pengzhu P Arnold Leonie L Dalla-Pozza Robert R Haas Nikolaus Alexander NA Oberhoffer Felix Sebastian FS
Healthcare (Basel, Switzerland) 20220309 3
<h4>Background</h4>This study aimed to investigate whether the cardiovascular care of Turner Syndrome (TS) women in Germany is in accordance with the latest clinical practice guidelines established by the 2016 Cincinnati international TS meeting.<h4>Methods</h4>An anonymous online questionnaire was created to ask TS subjects about existing cardiovascular conditions and cardiovascular care received. Depending on cardiovascular morbidity and type of medical care received, the fulfillment of the la ...[more]
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Project description:IntroductionHereditary angioedema (HAE) is a rare hereditary disease with an estimated prevalence of approximately 1 in 50,000.MethodsAn online survey was performed between January and June 2021 on a total of 99 HAE patients (with 92 of them aged 15 years and older and 7 of them being parents of patients under the age of 15 years). They were asked about their current situation, with a focus on the disease.ResultsThe survey results show that HAE has a strong influence on the patients' quality of life. In particular, the anxiety and uncertainty of not knowing when a swelling attack will occur is considered burdensome by the patients. In addition, there can be physical problems during an attack (depending on its severity) that severely burden and limit patients in their everyday lives. Only one-third of the patients surveyed stated that no or only very minor physical limitations occurred during their most recent swelling attack. Almost three-quarters of all patients receive regular treatment at an HAE center. The patients are mostly satisfied with the therapy and particularly with long-term prophylactics (LTPs). When an LTP was used, the frequency and severity of the swelling attacks, and their duration, were significantly lower and/or shorter than when no LTP was used.DiscussionDespite the high level of satisfaction with their current medication, 62% of patients expressed a strong/very strong interest in an oral LTP. In the group of patients already using an LTP, 74% reported a strong/very strong interest in an oral medication for long-term prophylaxis. The simplicity and minimal time involved in LTP use are considered beneficial to patients' quality of life.
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Project description:IntroductionNutrition plays a crucial role in current German public health strategies. While sociodemographic differences in nutrition have been extensively studied, recent data specific to Germany remains limited.MethodsAn online-representative cross-sectional survey was conducted in 2022 among German-speaking adults aged 18-75 using a Computer Assisted Web Interview (CAWI) format. The survey addressed personal eating habits, the importance of nutrition, motivations behind food choices, and openness to dietary changes. Data analysis included both descriptive and inferential statistics, incorporating CHAID decision tree analysis and nonparametric methods for inductive statistical evaluation.ResultsAmong the 4,065 participants, 62.3% regarded healthy nutrition as important, with women, individuals with higher education, and those aged under 26 or over 70 demonstrating greater emphasis on nutrition. CHAID analysis identified education as the most significant predictor of attitudes toward healthy nutrition, followed by sex and income. Participants with a positive attitude toward healthy nutrition reported higher HRQoL scores (EQ-Index = 0.862) compared to neutral or negative attitudes (EQ-Index = 0.835)0.10.5% of participants reported not to eat meat, 28.6% were self-reported flexitarians and 54.1% of participants considered themselves omnivorous. Gender-specific dietary preferences were observed, with plant-based diets being much more popular among females. Participants identified taste preference as the primary factor influencing food choices (77.2%) when asked about the main reasons for their eating habits. Approximately 18% of participants predominantly or exclusively bought organic foods. Interestingly, one third of participants indicated a willingness to adopt a more plant-based diet if recommended by physicians or scientists.ConclusionThis online representative survey revealed significant associations between nutrition and sociodemographic aspects. Understanding this complex interplay might be useful for public health nutrition strategies that promote healthier national eating patterns.
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Project description:Background Turner syndrome (TS) is associated with aortic dilatation and dissection, but the underlying process is unclear. The aim of this study was to investigate the elastic properties and composition of the aortic wall in women with TS.Methods In this cross-sectional study, 52 women with TS aged 35 ± 13 years (50% monosomy, 12 with bicuspid aortic valve [BAV] and 4 with coarctation) were investigated using carotid-femoral pulse wave velocity (CF-PWV) by echocardiography and ascending aortic distensibility (AAD) and aortic arch pulse wave velocity (AA-PWV) by magnetic resonance imaging (MRI). As control group, 13 women with BAV without TS and 48 healthy patients were included.Results Women with TS showed a higher AA-PWV (β = 1.08, confidence interval [CI]: 0.54-1.62) after correcting for age and comorbidities compared with controls. We found no significant difference in AAD and CF-PWV. In women with TS, the presence of BAV, coarctation of the aorta, or monosomy (45, X) was not associated with aortic stiffness. In addition, aortic tissue samples were investigated with routine and immunohistochemical stains in five additional women with TS who were operated. The tissue showed more compact smooth muscle cell layers with abnormal deposition and structure of elastin and diminished or absent expression of contractile proteins desmin, actin, and caldesmon, as well as the progesterone receptor.Conclusion Both aortic arch stiffness measurements on MRI and histomorphological changes point toward an inherent abnormal thoracic aortic wall in women with TS.
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Project description:Background and purposeWomen's representation in medicine has increased over time yet the proportion of women practicing neurointervention remains low. We conducted an anonymous online survey through which we could explore the gender gap in neurointervention, identify potential issues, difficulties, or obstacles women might face, and evaluate if men encounter similar issues.MethodsAn online questionnaire was designed in SurveyMonkey®. Invitation to participate was emailed through national and international neurointerventional societies as well as directly through private mailing lists to men and women working in neurointervention. Responses were collected from 10 May 2019 to 10 September 2019.ResultsThere were 295 complete responses, 173 (59%) male and 122 (41%) female. Most respondents (83%) fell within age categories 35-60 years, with representation from 40 countries across five continents. In all 95% were working full time, 73% had worked as a neurointerventionalist for >6 years, 77% worked in University-affiliated teaching institutions. Almost half of the respondents indicated no female neurointerventionalist worked in their center. Female respondents were younger and age-adjusted analysis was undertaken. Significantly fewer females than males were married and had children. Significantly fewer females held supervisory roles, held academic titles, and significantly less had a mentor. Females were less satisfied in their careers. More females felt they receive less recognition than colleagues of the opposite sex. Males had a greater proportion of work time dedicated to neurointervention. Similar proportions of both genders experienced bullying in work (40%-47%); however, sexual harassment was more common for females. There were no differences between genders in how they dealt with complications or their effects on mental well-being.ConclusionThere are many potential reasons why women are underrepresented in neurointervention, however, the literature suggests this is not unique to our specialty. Multiple long-term strategies will be necessary to address these issues, some of which are discussed in the article.
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