E Raes

Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts.

Introduction Despite having increased life expectancy, patients with congenital heart disease are sometimes presumed to have a diminished quality of life. This study therefore assessed the quality of life and perceived health of adults with congenital heart disease and compared these two measures with those reported by healthy control subjects. Methods Using a comparative study design, we examined quality of life and perceived health in 404 patients who were matched for age, sex, educational level, and employment status with 404 healthy counterparts. Quality of life was measured using a linear analog scale and the Satisfaction with Life Scale. Problems and concerns relevant to patients’ quality of life were assessed by the Congenital Heart Disease-TNO-AZL Adult Quality of Life scale. Perceived health was also assessed with a linear analog scale. Results Patients perceived their quality of life (median linear analog scale score 80; median Satisfaction with Life Scale score 28) and health status to be good (median linear analog scale 80). Quality of life was significantly better in patients with congenital heart disease than in healthy peers, with a mean standardized difference of 0.22 on the linear analog scale and 0.34 on the Satisfaction with Life Scale. No group difference was found for perceived health. Problems and concerns in adults with congenital heart disease overlapped to a large extent with those identified by control subjects. Patients reported significantly higher distress scores for 16 of 77 items, whereas control subjects perceived more distress for 20 items. Conclusion Adults with congenital heart disease perceived their quality of life to be better than did their healthy counterparts. This finding refutes the presumed lower quality of life in patients with cardiac anomalies. Eur J Cardiovasc Prev Rehabil 13:407-413

1370: Age and Gender Differences in Quality of Life and Perceived Health of Adults With Congenital Heart Disease

and PCI(0.69) group. At one year, we observed a considerable improvement in the CABG group (from 0.48 to 0.71), while the mean score of PCI hardly improved (from 0.69 to 0.70). Among patients of the medically treated group we observed a slight decrease in the mean EQ-5D score(from 0.59 to 0.57). When looking into more detail, 29% of the PCI and CABG patients reported at the one year follow-up questionnaire moderate to extreme problems on discomfort (including pain), whereas 45% of the medically treated patients reported problems on this dimension. A high percentage of patients()20%), irrespectively, of the chosen treatment option, reported problems with respect to four out of the five dimensions of the EQ-5D questionnaire. Conclusion: Two important findings may be identified in the current study. Firstly, we observed significant differences in the initial EQ-5D score between the three treatment groups, whereas after one year PCI and CABG patients were comparable, while the QoL of medically treated patients lingered. Secondly, a high percentage of patients reported moderate to extreme problems with respect to mobility, activity, discomfort and anxiety. One could question if nurses, by means of non-medical interventions (physical exercises, educational programmes and yor psychological support ), could positively influence these undesirable high percentages of patients reporting problem on the EQ-5D.