3 research outputs found

    Decision-Making in Thoracic Aortic Aneurysm Surgery—Clinician and Patient View

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    Treatment decision-making in thoracic aortic aneurysms of the ascending aorta is complex both with regard to the timing of surgery and with regard to the invasive treatment strategy. From a clinician perspective, it is seen as important to balance the risks of watchful waiting versus preventive surgery and to choose a surgical treatment strategy that will result in the lowest early and late event occurrence. The current clinical practice guidelines and reported outcomes after surgery suggest that there are many gray zones in determining the optimal timing and the type of intervention. From a patient perspective, quality of life and in particular minimization of anxiety and depression due to the fear of aortic rupture or the potential occurrence of complications related to the different treatment strategies are important to consider. Quality of life studies a

    Measuring what matters to the patient: health related quality of life after aortic valve and thoracic aortic surgery

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    With improved outcomes following cardiac surgery, health related quality of life (HRQoL) gains increasing importance for the better judgement of choosing the preferred treatment strategy in the individual patient. The physician perception of patient preferences can differ considerably from actual patient preferences, underlining the importance of gathering evidence of actual patient preferences before and quality of life after cardiac surgery. The objective of the current review is to provide an overview of current insights into the quality of life measurements after aortic valve and thoracic aortic surgery and to provide starting points for the application of HRQoL measurements toward the future. The amount and level of evidence on HRQoL outcomes after aortic valve and thoracic aortic surgery seems to be insufficient. Little has been investigated about the natural course of HRQoL after cardiac surgery, HRQoL outcomes between different surgical strategies, HRQoL outcomes between surgical patients and the general population, the different factors influencing HRQoL after cardiac surgery, and the effect of HRQoL on healthcare costs. More prospective studies should be performed, taking into account the knowledge gaps that need to be filled. Computerized adaptive testing methods through open source programs can be implemented to keep the burden to the patient as low as possible and catalyze the use of these tools. Our cardiovascular surgery community has the responsibility to deliberate how it can proceed to effectively fill in these knowledge gaps, and use this newfound knowledge to improve shared treatment decision making, patient outcomes, and ultimately optimize health care efficiency

    Male–female differences in quality of life and coping style in patients with Marfan syndrome and hereditary thoracic aortic diseases

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    Hereditary thoracic aortic diseases (HTAD) such as Marfan syndrome (MFS) affect multiple organ systems and provide a risk of acute aortic dissection, which causes lifelong uncertainties. Although health-related quality of life (HRQOL) was found to be reduced in HTAD patients, no studies have evaluated male–female-specific aspects of HRQOL and coping in this population. This study aims to evaluate HRQOL in HTAD patients compared to the general population; assess male–female differences in HRQOL and factors associated with HRQOL; evaluate coping styles in male and female HTAD patients and identify factors associated with acceptance. All consecutive adult patients who visited the specialized HTAD outpatient clinic between 2013 and 2018 were asked to complete three HRQOL questionnaires: the Short Form 36 (SF-36), the Hospital Anxiety and Depression Scale (HADS), and the Nijmegen Clinical Screening Instrument (NCSI). In total, 142 patients were included (mean age 42.1 years, 65 females, 123 MFS). Compared to the general population, HTAD patients scored significantly lower on multiple SF-36 sub-domains (males: General Health 54.5 ± 18.8 vs. 71.6 ± 20.6, p <.001; Vitality 58.3 ± 20.4 vs. 71.9 ± 18.3, p <.001; females: Physical Functioning 67.5 ± 23.8 vs. 80.4 ± 24.2, p =.003; Role Physical 58.3 ± 45.1 vs. 73.8 ± 38.5, p =.047; General Health 49.4 ± 24.3 vs. 69.9 ± 20.6, p <.001; Social Functioning 73.5 ± 22.0 vs. 82.0 ± 23.5, p =.027). Females scored significantly lower than males on the SF-36 physical component score (41.6 [IQR 35.5–53.1] vs. 49.3 [IQR 42.3–54.6], p =.035). Males scored significantly higher on the coping style denial than females (2.75 [IQR 2.00–3.25] vs. 2.25 [IQR 1.75–3.25], p =.018). High scores on acceptance were found in 38 (26.8%) of HTAD patients, and these patients showed significantly better scores on the NCSI, SF-36, and HADS, except on NCSI Satisfaction Relationships and SF-36 Physical Functioning and Mental Health. Acceptance was associated with more medication use (beta blocker use, p =.008; angiotensin receptor blocker use, p =.003) and less hypertension (p =.001). In patients with MFS, employment was strongly associated with better scores on the NCSI. In conclusion, HTAD patients showed subnormal HRQOL, especially females. Interestingly, in both males and females factors such as employment, coping style, and disease acceptance seem more important for HRQOL than disease-related factors. This highlights the importance of genetic counseling and guidance for HTAD patients, and offers valuable leads for HRQOL improvement
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