The Psychosocial Consequences of a Congenital Heart Disease in Adult Life: Young Female Patients at Risk

This review describes the main findings of a long-term longitudinal cohort study investigating the psychosocial functioning of adults with congenital heart disease (ConHD). This longitudinal study encompasses two follow-ups of (almost) the same cohort of patients. Methods: For this study, all consecutive patients who underwent their first open heart surgery for ConHD between 1968-1980 in the Erasmus Medical Center Rotterdam, and who were younger than 15 years of age at the time of surgery, were eligible. The first follow-up was executed between 1989-1991 and the second follow-up, of the same cohort, between 2000-2001 (follow-up intervals respectively: 9-23 years and 20-33 years after the first cardiac surgery). Results: Overall, in both follow-ups, favourable outcomes were found as to biographical variables and social functioning. No clear relationships were found between cardiac diagnoses and psychosocial outcomes. In the second follow-up, significantly more ConHD patients scored in the psychopathological range compared to the normative reference group. Especially young female patients (20-27 years) were at risk for elevated levels of psychopathology. Young female patients showed less adequate coping styles and they felt more limited due to physical functioning than older female patients. Conclusion and Discussion: Young female patients may have struggled with disease specific uncertainties as to sexual relationships, birth control, pregnancy risks, delivery and offspring, which may have negatively influenced their emotional functioning. Clinical Implications Encompass: early screening and treatment for psychopathology, attention to subjective restrictions, patient education, monitored physical training and psychological counselling by a psychologist with expertise in this very unique field.