Quality of life experienced by adults with congenital heart disease.

Adults with congenital heart disease (CHD) represent a growing population of patients. Medical and surgical advances have increased the number of CHD adult survivors, which may create quality-of-life (QOL) issues not previously considered. Quality-of-life issues pertinent to this patient population involve health and life insurance acquisition, birth control, genetic counseling, pregnancy concerns, employment, and independent living arrangements. The purpose of this study was to describe the QOL of adults with CHD. The study used a prospective cross-sectional case-control design to examine QOL using the Sickness Impact Profile (SIP). The study participants were a sample of 124 adults with CHD from an outpatient cardiology clinic in a metropolitan university-affiliated teaching hospital in the Northeast and 124 matched healthy control subjects. Between the participants and the matched control subjects, there was a significant difference in the total mean SIP score, the physical and psychosocial dimension scores, and all the category scores (P < 0.05). The areas of life the adults with CHD reported as lacking in quality involved the categories of work (SIP of 11.1, moderate disability) and sleep and rest (SIP of 9.03, mild disability). The results of this study indicate that the SIP can be used for quantitative and subjective QOL assessment of adults with CHD. It is suggested that cardiac advanced practice nurses use the results of this study to develop appropriate information, counseling, and anticipatory guidance for this patient population.