TY  - EJOU
AU  - Wolff, Djoeke 
AU  - Wiel, Henricus B. M. van de 
AU  - Keizer, Mirthe E. de Muinck 
AU  - Melle, Joost P. van 
AU  - Pieper, Petronella G. 
AU  - Berger, Rolf M. F. 
AU  - Ebels, Tjark 
AU  - Schultz, Willebrord C. M. Weijmar 

TI  - Quality of life and sexual well-being in patients with a Fontan circulation: An explorative pilot study with a mixed method design
T2  - Structural and Congenital Heart Disease

PY  - 2018
VL  - 13
IS  - 2
SN  - 3071-1738

AB  - <b>Objective:</b> 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.<br/>
<b>Methods:</b> 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.<br/>
<b>Results:</b> 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).<br/>
<b>Conclusions:</b> 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.
KW  - congenital heart disease
KW  -  Fontan physiology
KW  -  quality of life
KW  -  sexual functioning
KW  -  special populations

DO  - 10.1111/chd.12576