Self-reported health status (EQ-5D) in adults with congenital heart disease

Today, more patients with congenital heart disease (CHD) reach adulthood. There are conflicting findings concerning the relationship between quality of life (QoL) or health state for adults with CHD and the complexity of their CHD. The aim of the study was, firstly, to compare the reported health status and health perception of adult patients with CHD and, secondly, to investigate what variables influenced the patients' health status and health perception.

Data from 1435 patients completing the EQ-5D questionnaire, which includes reported health status and health perception, were analyzed.

Valid EQ-5D data were reported by 1274 patients, showing overall results indicating a good health status. Problems were most frequently reported in the dimension "pain/discomfort" (31.9%) and "anxiety/depression" (29.8%). Higher occurrence of problems were reported by patients with complex disease i.e. single ventricle (p<0.001) and by female patients (p<0.0001). Symptomatic patients reported a lower health status (p<0.0001) and a lower perceived health on EQ-VAS (p<0.0001). Of the asymptomatic patients, 20.5% nevertheless reported problems in "pain/discomfort" and 22.2% in the "anxiety/depression" dimension.

The health status of adults with CHD is influenced by symptoms, NYHA-classification, age and gender. Adults with CHD report a lower occurrence of problems in comparison to previously published results from a general population, but the importance of actively asking about the patient's experience is demonstrated by the high degree of asymptomatic patients reporting problems on EQ-5D.