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Quality of life and sexual well-being in patients with a Fontan circulation: An explorative pilot study with a mixed method design

Djoeke Wolff1, Henricus B. M. van de Wiel2, Mirthe E. de Muinck Keizer1, Joost P. van Melle3, Petronella G. Pieper3, Rolf M. F. Berger1, Tjark Ebels4, Willebrord C. M. Weijmar Schultz5
1 Department of Pediatric Cardiology, Center for Congenital Heart Diseases, Beatrix Children’s Hospital, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
2 Wenckebach Institute, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
3 Center for Congenital Heart Diseases, Department of Cardiology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
4 Center for Congenital Heart Diseases, Department of Cardiothoracic Surgery, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
5 Department of Obstetrics and Gynecology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
* Corresponding Author: Djoeke Wolff, Beatrix Children’s Hospital, Department of Pediatric Cardiology, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands. Email:

Congenital Heart Disease 2018, 13(2), 319-326. https://doi.org/10.1111/chd.12576

Abstract

Objective: To get an impression of the quality of life (QOL) and sexual well-being in the Fontan population, and to generate hypotheses for future research.
Methods: For this cross-sectional pilot study, questionnaires regarding health-related QOL, sexual function and fertility/pregnancy were completed by 21 patients with a Fontan circulation >16 years old, followed at the University Medical Center Groningen, the Netherlands. Semi-structured qualitative interviews were conducted in 8 patients.
Results: Fontan patients scored significantly lower on general health than their healthy peers (t (19)=-3.0, P = .008), whereas their scores on other QOL domains and sexual well-being were comparable to normal values. During childhood, most patients experienced physical limitations and the feeling of being an outsider, and frequently faced bullying. Regarding sexual well-being, large interindividual differences were noted. Four interviewed patients (25-30 years) reported a good sexual well-being, whereas the other interviewed patients (33-47 years) reported erectile dysfunction, low self-esteem and avoidance of sexual intercourse. Both the QOL domains mental health and role restrictions due to emotional problems were associated with female avoidance (P 5 .083, respectively, P = .089) and dyspareunia (P = ns respectively P = .094). In males, role restrictions due to physical problems and health change were related to sexual dissatisfaction (P = .056) respectively nonsensuality (P = .025).
Conclusions: Overall, Fontan patients have a relatively preserved quality of life and sexual wellbeing but face more social isolation and bullying during childhood/adolescence than their healthy peers. Sexual problems were mainly associated with physical limitations in males and with psychosocial limitations in females. Finally, sexual dysfunction was more common in older Fontan patients, and future research has to clarify whether progressive attrition of the Fontan circulation affects the patients’ QOL and sexual well-being.

Keywords

congenital heart disease, Fontan physiology, quality of life, sexual functioning, special populations

Cite This Article

Wolff, D., B., H., E., M., P., J., Pieper, P. G. et al. (2018). Quality of life and sexual well-being in patients with a Fontan circulation: An explorative pilot study with a mixed method design. Congenital Heart Disease, 13(2), 319–326.



This work is licensed under a Creative Commons Attribution 4.0 International License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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