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Original research article
Factors associated with health-related quality of life among adults with tetralogy of Fallot
  1. Anette Sandtröm1,
  2. Camilla Sandberg1,
  3. Daniel Rinnström1,
  4. Gunnar Engström1,
  5. Mikael Dellborg2,
  6. Ulf Thilén3,
  7. Peder Sörensson4,
  8. Niels-Erik Nielsen5,
  9. Christina Christersson6 and
  10. Bengt Johansson1
  1. 1 Heart Centre and Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden
  2. 2 Department of Molecular and Clinical Medicine, University of Gothenburg, Gothenburg, Sweden
  3. 3 Department of Cardiology, Clinical Sciences, Lund University, Lund, Sweden
  4. 4 Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden
  5. 5 Department of Medical and Health Sciences, Linköping University, Linköping, Sweden
  6. 6 Department of Medical Sciences, Cardiology, Uppsala University, Uppsala, Sweden
  1. Correspondence to Dr Bengt Johansson; bengt.johansson{at}


Background 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).

Methods 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.

Results 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.

Conclusion 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.

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

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  • Contributors All authors have contributed to data collection, draft, critically reviewed the draft and finally approved the manuscript. ASS, CS, DR and BJ have performed database work and performed the statistical analysis.

  • Funding This study was funded by Västerbotten Läns Landsting, Norrländska Hjärtfonden, Riksförbundet HjärtLung and Hjärt-Lungfonden.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The investigation was approved by the Regional Ethical Review Board in Umeå, Sweden (Dnr 08-218 M, Dnr 2012 445-32 M and Dnr 2015-212-32 M).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The study is based on the national register SWEDCON where all data are stored.

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