Quality of Life 20 and 30 Years After Surgery in Patients Operated on for Tetralogy of Fallot and for Atrial Septal Defect

Abstract

Follow-up studies on patients operated on for congenital heart defects have shown good anatomical results and long-term survival. To date, there have been few studies on such patients with regard to long-term psychosocial outcome and quality of life. In this study, two cohorts of patients operated on before the age of 15 years, one for tetralogy of Fallot (TOF) and the other for atrial septal defect (ASD), were investigated 20 and 30 years after operation regarding quality of life. The combined cohort had a higher educational level than average. There was no connection between quality of life and physical health as judged from the New York Heart Association classification. The TOF group rated their quality of life higher than the ASD group, but both groups had lower figures at the 30-year than at the 20-year follow-up. Fewer patients in the TOF than in the ASD group considered that their lives were affected by the heart disease. It is concluded that the severity of the heart disease is not necessarily congruent with estimated quality of live and that mild heart defects, such as ASD, can have a considerable impact on later life quality. Surprisingly few TOF patients were affected negatively, a finding which might reflect development of a specific coping strategy in these patients during childhood.

Young adults experiences of living with congenital heart disease

“…The interviews gave no indication of poor psychosocial adaptation or quality of life; instead the interviewees' quality of life was good and was not affected by the heart disease. This is consistent with findings by Ternestedt et al [7] that patients with a mild heart defect, atrial septal defect, and patients with a more severe defect tetratology of Fallot, both report high quality of life 20-30 years after surgery. Surprisingly, the tetratology of Fallotgroup rated their quality of life higher than did the atrial septal defect group.…”

“…Such problems are compounded by distressing signs and symp-0167-5273/$ -see front matter D 2005 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ijcard.2005.08.006 toms of the cardiac disease: chest pain, palpitations, arrhythmias, blue fingertips and lips, fatigue, chest deformation and scars [6,7]. On the other hand, objective physical data, such as cyanosis, cardiac failure or arrhythmia are not significantly correlated to the patients' health-related quality of life or subjective health status [8].…”

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

“…Surprisingly, comparison of patient subgroups showed that neither the severity of illness nor the presence of cyanosis had an impact on QOL. Ternested et al [20] reported similar findings.…”

Individual quality of life in adults with congenital heart disease: a paradigm shift

“…To date, all published studies examining quality of life issues in adults with congenital heart disease have used the need approach. [14][15][16][17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32] In these studies, quality of life was measured from a functional or socioeconomic, rather than an individual, perspective. The former approach typically uses standardized questionnaires or classification systems.…”