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• W2220389581 abstract "investigate the late, self-reported quality of life (QOL) for Fontan patients, with comparison against both a small group (n ¼ 13) of adults who underwent pediatric heart transplantation and the general population. To very briefly summarize a lot of data, the Fontan patients’(median age ¼ 25 years, range: 19-55) QOL measures were very similar to the general population. There were no differences with regard to mental, social, and overall energy scores, but they did report lower scores in the physical function, bodily pain, and general health domains. Of note, the Fontan patients were not significantly different from the heart transplant patients in any domains. These findings are consistent with several previous studies. d’Udekem et al 2 also reported on Fontan survivors in their 20s with similar QOL self-reported measures falling essentially within the normal range. Unlike the current study, however, d’Udekem et al also performed exercise stress tests, which demonstrated relatively preserved exercise capacity in Fontan patients, as long as they remained arrhythmia-free. It is interesting to note that the current study included only extracardiac conduit Fontan patients, while the older study compared classic atrio-pulmonary Fontans against lateral tunnel Fontan patients, thus all 3 of the most commonly performed Fontan procedures were represented in these 2 studies, with comparable QOL outcomes in early adulthood. As the authors of the current study note, there have been many reports documenting a disconnect between self-reported QOL and other markers of functional status such as exercise testing, family or teacher evaluations, educational achievement, employment status, and many others. A surprisingly consistent finding across many different chronic diseases has been that objective measures of patients’ functional state, whether physical, mental, or socio-economic, often demonstrate variable degrees of dysfunction, while the patients’ selfreported QOL measures are often near or above normal. So in essence, many of these patients have problems, but they feel that they are pretty similar to the general population." @default.
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• W2220389581 date "2015-01-01" @default.
• W2220389581 modified "2023-09-27" @default.
• W2220389581 title "What is A “Good” Outcome? and Who Decides?" @default.
• W2220389581 cites W1439655260 @default.
• W2220389581 cites W2083161533 @default.
• W2220389581 doi "https://doi.org/10.1053/j.semtcvs.2015.08.010" @default.
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