Quality of Life of Adults with Congenital Heart Disease

Abstract

Adults with Congenital Heart Disease (CHD) are a new and growing population of patients who pose a challenge to both medicine and nursing. Medical and surgical advances have increased the number of adults with CHD. These advances may create Quality of Life (QOL) issues which were not previously considered. The purpose of this study was to collect data describing the QOL of adults with CHD in order for health professionals to develop appropriate information, counseling, and anticipatory guidance. This study was a case-control study design utilizing a QOL assessment tool, the Sickness impact Profile (SIP), along with a demographic questionnaire. A convenience sample of 124 adults with CHD and 124 matched healthy controls participated in the study. Overall, SIP scores and each of the component subscores range from 0 (no disability) to 100. There was a statistically significant difference between the adults with CHD and their healthy controls in the total SIP score, the physical and psychosocial dimension score and all category scores (p < .05). The areas of life of the adults with CHD reported as being most affected were the category scores of work (SIP 11.1), and sleep and rest (SIP of 9.03). The data did not reveal a statistically significant difference between those with cyanotic anomalies versus acyanotic anomalies, however when those individuals with Tricuspid Atresia (TAT) and Single Ventricle (SIV) were combined, there was a statistically significant difference between TAT and SIV and those with acyanotic anomalies (p < .05). The primary diagnosis of those adults reporting the poorest QOL was TAT. Total SIP scores for adults with TAT were statistically significantly higher (p < .05) than those adults with the primary diagnoses of coarctation of the aorta (COA) and aortic stenosis, general (ASG), and borderline statistically significant difference (p < .10) between those with TAT and pulmonic stenosis, general (PSG). The significance of this study does indicate that adults with CHD did not see themselves as having any physical limitations, their perception of themselves and their individual expectations are normal.