The psychosocial status of adults living with congenital heart disease (CHD) has improved over the past couple of decades, researchers report of a cross-sectional study that analyzed CHD patients’ quality of life between 1995 and 2015.
The study, published ahead of print in the International Journal of Cardiology, addresses a sector of life often overlooked in patients with CHD—their psychosocial health.
“This patient group needs special care, especially since adults with CHD have to deal with a variety of non-cardiac difficulties,” Alina Kronwitter, of the Technical University of Munich, and coauthors wrote, noting the number of CHD patients who survive to adulthood is continuing to increase. “These can relate to physical exercise, contraception and pregnancy as well as social and psychological problems. For this reason, the attending physicians should also pay attention to these areas and provide psychological support on a multidisciplinary basis.”
Kronwitter and her team enrolled 283 adults with CHD for their work, identifying each patient’s “Ability Index” grade through a questionnaire that addressed education, employment, hobbies, insurance, living condition, sexual health and psychosocial situation. The survey mimicked that of a 1995 venture out of Cologne, Germany, where a scientist conducted a study of psychosocial health in 146 adults with CHD.
Comparing their results to those of the 1995 project, the authors reported patients in both cohorts were similarly matched in their Ability Index, which measures psychosocial health on a scale where grade 1 means the patient has a normal, full life and grade 4 means means the patient is extremely limited, dependent and “almost housebound.”
Patients in 2015 were more likely than their 1995 counterparts to report better school performance, employment and sports abilities. Kronwitter et al. also found patients in 2015:
- Felt they were more informed about their illness than 20 years ago (97.3 percent compared to 84.7 percent in the 1995 cohort)
- Reported feeling sad less often (21.5 percent compared to 33.9 percent in 1995)
- Had difficulty accepting their illness less often (11.3 percent versus 22.1 percent in 1995)
- Said they were more independent (91.3 percent versus 81.8 percent in 1995)
- Reported feeling the same levels of anxiety, frequent rumination, social contact with other patients with heart diseases, introversion, curiosity, assertiveness and impatience as patients in 1995
The authors said anxiety, lack of curiosity and age over 33 were predictors for a worse psychosocial situation. In the 2015 study, women reported higher anxiety levels and heightened illness-connected burden than men, but they also reported higher levels of independence and lower alcohol consumption.
“Diagnostic and therapeutic progress over the past 20 years as well as an improved organization of care by CHD-specialized cardiologists and centers seems to lead to a shift to more complex adults with CHD,” Kronwitter and colleagues wrote. “Higher degrees and an improved occupation situation on the one hand, sport attitude and modified health awareness on the other hand follow a trend which can be observed in the general population over the last two decades.”
The team said education in sexual matters and pregnancy are still insufficient in the CHD population and indicate a need for improvement.
“Particular needs and concerns should be addressed individually via doctor-patient communication,” they wrote. “The findings here suggest that especially female patients appear to have a higher demand for counseling information, for example [in relation to] reproduction issues.”