Open AccessQuality of life and sexual well‐being in patients with a Fontan circulation: An explorative pilot study with a mixed method design
Author(s) -
Wolff Djoeke,
van de Wiel Henricus B. M.,
de Muinck Keizer Mirthe E.,
van Melle Joost P.,
Pieper Petronella G.,
Berger Rolf M. F.,
Ebels Tjark,
Weijmar Schultz Willebrord C. M.
Publication year - 2018
Publication title -
congenital heart disease
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.828
H-Index - 42
eISSN - 1747-0803
pISSN - 1747-079X
DOI - 10.1111/chd.12576
Subject(s) - medicine , quality of life (healthcare) , sexual function , feeling , reproductive health , population , clinical psychology , pediatrics , psychology , social psychology , nursing , environmental health
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 = .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.