Perception of general health in adults with congenital heart disease who no longer attend medical follow-up

BACKGROUND: Numerous patients with congenital heart disease (CHD) do not attend regular follow-up. How these patients perceive their health is unknown. A news story recently reached the front pages in Denmark, stating that patients with CHD not attending medical follow-up could be at great risk. This made a number of "lost" patients come forward and offered a unique opportunity to learn more about how these patients manage life.

AIMS: To describe the perception of general health in a sample of grown-up congenital heart disease (GUCH) patients who are no longer in medical follow-up and to determine whether patients feel affected in daily life because of their heart disease.

METHODS: A convenient sample of 125 respondents was asked to complete a questionnaire, using questions from Short Form 36 and self-constructed questions. Data were processed in SPSS and analysed by means of Student's t-test, ANOVA, Chi-square test, and Pearson's correlation coefficient.

RESULTS: 125 patients participated, with a mean age of 38 years, 37% were men. Mean scores for general health perception were 75.8 for men and 77.2 for women. The scores seem to follow the pattern seen in the general population. Most patients, 83%, did not feel limited in their daily activities. 67% of women and 52% of men, however, worried about their heart disease.

CONCLUSION: Patients not attending medical follow-up seem to be affected to some degree by their heart disease.