Health-Related Quality of Life Declines Over 3 Years for Congenital Heart Disease Survivors

Background Because of medical advancements, many congenital heart disease (CHD) survivors are relatively symptom-free until adulthood, at which time complications may occur. Worsening health status likely drives a change in patient-reported outcomes, such as health-related quality of life (HRQoL), although change in HRQoL has not been investigated among adolescent and young adult CHD survivors. Objective The aims of the current mixed cross-sectional and longitudinal study were to (1) examine changes in HRQoL over 3 years and (2) identify any demographic (age, sex, estimated family income, and distance from medical center) and medical predictors (functional status and number of cardiac-related medications) of that change. Methods Baseline and 3-year follow-up data were obtained via an online survey of 172 CHD survivors (15-39 years old at baseline; 25% simple, 45% moderate, 30% complex) recruited from a pediatric hospital and an adult hospital. Medical predictors were abstracted from electronic medical records. Results After controlling for New York Heart Association functional class, mixed-effects models identified significant declines in all subscales of the Research and Development Corporation 36-Item Health Survey 1.0 across the 3-year timeframe. A lower estimated family income (<=$35 000) predicted more decline in physical functioning (b = 0.5, 95% confidence interval, 0.2-0.8; P = .001) and emotional functioning (b = 0.3, 95% confidence interval, 0.1-0.5; P = .017). No other significant demographic or medical predictors were identified. Conclusions Study findings highlight the importance of tracking patient-reported outcomes over time, suggesting that medical staff should discuss HRQoL with CHD survivors during late adolescence and early adulthood before decline.