Current subjective state of health, and longitudinal psychological well-being over a period of 10 years, in a cohort of adults with congenital cardiac disease

Objective: To examine the current subjective state of health, and the longitudinal course of psychological well-being, in adult patients with congenital cardiac malformations. Methods: Our study concerns the second follow-up of a cohort of patients with congenital cardiac malformations. We examined 362 consecutive patients, aged from 20 to 46 years, who underwent surgical procedures for treatment of congenital cardiac disease between 1968 and 1980, specifically for treatment of atrial and ventricular septal defects, tetralogy of Fallot, transposition, and pulmonary stenosis. The patients were submitted to extensive medical and psychological examination. During psychological examination, in which all patients were seen by the same psychologist (EvR), patients filled in questionnaires concerning their current subjective state of health, using the 36-item Short Form Health Survey (SF-36), and psychological well-being, answering the Heart Patients Psychological Questionnaire. The data we acquired at their first follow-up was used to measure the longitudinal course of psychological well-being over the intervening period of 10 years. Results: When compared to a reference group, the patients assessed their state of health less favourably concerning physical functioning, but more favourable with regard to social functioning, bodily pain, and limitations of role due to emotional problems. Younger female patients reported more limitations of role due to physical functioning than did the female patients who were older. Patients with transposition showed a negative trend for their subjective state of health, but reported the least bodily pain. Within the overall group of patients, displeasure had increased, while social inhibition had decreased, over the intervening period of 10 years. Conclusion: Extra attention should be paid to the subjective experiences of young female patients with congenital cardiac disease. The patients with transposed arterial trunks seem overall to experience poorer physical health.