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Open Heart. 2019 Feb 27;6(1):e000932. doi: 10.1136/openhrt-2018-000932. eCollection 2019.

Factors associated with health-related quality of life among adults with tetralogy of Fallot.

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Heart Centre and Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.
Department of Molecular and Clinical Medicine, University of Gothenburg, Gothenburg, Sweden.
Department of Cardiology, Clinical Sciences, Lund University, Lund, Sweden.
Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.
Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
Department of Medical Sciences, Cardiology, Uppsala University, Uppsala, Sweden.



Due to improved care, the numbers of patients with tetralogy of Fallot (ToF) are increasing. However, long-term morbidity and need for reinterventions are concerns and also address issues of quality of life (QoL).


Patients with ToF and valid EuroQol-5 dimensions questionnaire (EQ-5D) were identified in the national Swedish register on congenital heart disease. EQ-5Dindex was calculated and dichotomised into best possible health-related QoL (EQ-5Dindex=1) or differed from 1.


288 patients met the criteria and were analysed. Univariate logistic regression showed a positive association between New York Heart Association (NYHA) class I (OR 8.32, 95% CI 3.80 to 18.21), physical activity >3 h/week (OR 3.34, 95% CI 1.67 to 6.66) and a better right ventricular function (OR 2.56, 95% CI 1.09 to 6.02). A negative association between symptoms (OR 0.23, 95% CI 0.13 to 0.42), cardiovascular medication (OR 0.31, 95% CI 0.18 to 0.53), age (OR 0.97, 95% CI 0.96 to 0.99) and EQ-5Dindex was observed. In multivariate logistic regression, NYHA I (OR 7.28, 95% CI 3.29 to 16.12) and physical activity >3 h/week (OR 2.27, 95% CI 1.07 to 4.84) remained associated with best possible health-related QoL. Replacing NYHA with symptoms in the model yielded similar results.


In this registry study, self-reported physical activity, staff-reported NYHA class and absence of symptoms were strongly associated with best possible health-related QoL measured by EQ-5D. Physical activity level is a potential target for intervention to improve QoL in this population but randomised trials are needed to test such a hypothesis.


congenital heart disease; physical activity; quality of life; register; tetralogy of fallot

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