title: What is the perceived quality of life of adults with congenital heart disease and does it differ by anomaly?
abstract: Adults with congenital heart disease (CHD) represent a growing population of patients thanks to the medical and surgical advances which enable at least 85% of children to survive to adulthood. These advances may create quality-of-life (QoL) issues not previously considered. The purpose of this cross-sectional study of 124 adults with CHD was to describe their QoL as a basis for providing appropriate information, counseling, and anticipatory guidance. Thirteen patients had single ventricle physiology (SVP), 43 had cyanotic lesions with 2 ventricle repairs, and 68 had acyanotic CHD. On the basis of Sickness Impact Profile (SIP) scores, individuals with SVP had worse QoL than did those with cyanotic lesions (with 2 ventricle repairs) and acyanotic anomalies (SIP = 9.98 vs 4.61 and 3.76). SIP scores were statistically significantly different between those with SVP and those with acyanotic anomalies (P = .02). For all groups, the areas of life most affected were work and sleep and rest. Participants with SVP saw themselves as having the poorest QoL.
authors.affiliation: School of Nursing, Duquesne University, Pittsburgh, PA 15282, USA. Simko@duq.edu
authors.forename: Lynn Coletta
authors.initials: LC
authors.lastname: Simko
authors.forename: Kathleen A
authors.initials: KA
authors.lastname: McGinnis
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000704:Analysis of Variance; D001294:Attitude to Health; D003430:Cross-Sectional Studies; D003490:Cyanosis / Q000209:etiology*; D006233:Persons with Disabilities / Q000145:classification / Q000523:psychology; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006304:Health Status; D006330:Heart Defects, Congenital / Q000145:classification / Q000150:complications* / Q000523:psychology*; D006801:Humans; D008297:Male; D020380:Needs Assessment; D009511:New England; D024802:Nurse's Role; D009730:Nursing Assessment; D010353:Patient Education as Topic; D011788:Quality of Life / Q000523:psychology*; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires