Background: Studies show that patients with congenital heart disease (CHD) too often do not attend
medically necessary follow-up and routine examinations, which is associated with increased,
but also avoidable morbidity and mortality. Research to date indicates that the utilization
of medical care services in patients with CHD depends not only on the complexity of
the CHD but also on psychological aspects.
Methods: We surveyed 1,486 individuals aged 18 to 85 (average age = 36.84 years; 60.8% female)
with CHD online on adherence, illness perception, and physician–patient relationship.
Participants were recruited from the German National Register for Congenital Heart
Defects (NRCHD). CHD was classified into simple, moderate, or complex. A multiple
linear regression was performed with the assessment of the subjective importance of
regular cardiological checkups as the dependent variable, items on illness perception
(Brief Illness Perception Questionnaire, Broadbent et al, 2006), and physician–patient
relationship as independent variables (gender/age/CHD severity as control variables).
Results: The subjective importance of regular checkups was significantly predicted in relation
to illness perception by the individual concern about the CHD (β = 0.29, p < 0.001), subjective usefulness of the treatment (β = 0.28, p < 0.001), perceived impairment of the disease (β = 0.19, p < 0.001) and the experience of control (β = −0.08, p < 0.001). Regarding the physician–patient relationship, only trust in the cardiologist
(β = 0.11, p < 0.001) was significant in predicting the subjective importance of checkups. In
contrast, emotional involvement, physical complaints, understanding the CHD and the
physician’s explanations as well as feeling well-informed by the treating physician
and having own knowledge about the CHD were not significant (p > 0.05).
Conclusion: In addition to previous research findings, this study provides evidence that patients’
adherence to treatment is significantly influenced by psychological aspects such as
feelings of control, worry, trust in the treating physician, and the subjective benefits
of treatment. Mere knowledge of the disease and physical symptoms alone do not appear
to play a primary role in adherence. Accordingly, psychological aspects are of central
importance for high adherence and successful holistic patient-oriented treatment should
always be taken into account.
