Abstract
BackgroundWe used structural equation modeling to evaluate the quality of life (QOL) for patients with Marfan syndrome (MFS). The goal was to provide guidelines to facilitate the development of interventions and strategies to improve the QOL for patients with MFS.MethodsThe participants fulfilled the Ghent 2 criteria for MFS and they comprised patients who visited the cardiology outpatient department of a tertiary hospital in Seoul, Korea, between August 17, 2013 and April 17, 2014. Demographic, social support, disease-related factors, biobehavioral factors, and QOL data were collected in one-on-one interviews.ResultsThe final analyses included 218 patients. Anxious and depressed patients comprised 63.8 and 71.5 % of the sample, respectively. For the hypothetical model, the goodness-of-fit index = 0.91, normal fit index = 0.93, and comparative fit index = 0.90. The outcome was suitable for the recommended level, so the hypothetical model appeared to fit the data. In patients with MFS, the QOL was affected significantly by social support, disease-related factors, and biobehavioral factors. These variables explained 72.4 % of the QOL in patients with MFS. Biobehavioral factors had the strongest and most direct effects on QOL.ConclusionTo improve QOL in patients with MFS, comprehensive interventions are necessary to assess and manage biobehavioral factors, social support, and disease-related factors.
Highlights
We used structural equation modeling to evaluate the quality of life (QOL) for patients with Marfan syndrome (MFS)
We found that disease-related factors had the greatest impact on biobehavioral factors
The results of this study demonstrate that social support influenced biobehavioral factors
Summary
We used structural equation modeling to evaluate the quality of life (QOL) for patients with Marfan syndrome (MFS). The average life expectancy of individuals with MFS has been extended and it is similar to that of healthy people when patients receive appropriate interventions, such as the administration of beta-blockers, restrictions on physical activity, and aortic surgery [2]. These medical treatments have improved the survival rate and health status of patients with MFS [3]. There is a >50 % possibility of the disease being transmitted to the children of patients with MFS [6] and they have distinct physical characteristics [7, 8]. It is necessary to consider physical and psychological aspects when assessing the overall quality of life (QOL) in patients with MFS
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