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

Abstract

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.

Quality of life in adult patients with congenital heart disease: Results of a double-center study

“…None of these factors had a significant effect on QoL. The literature is contradictory on the effect of social factors: Jackson et al ( 26 ) had the same results, but Andonian et al ( 27 ) and Rometsch et al ( 18 ) found significantly worse results for female patients. In a study by Apers et al ( 13 ), being married was related to better QoL, but Chen et al ( 28 ) found no relationship between this factor and QoL in their study population.…”

“…To remove negative numbers, we added the constant number of +15 to all numbers and got numbers in the range of 0 to 30. We classified them into three categories: undesirable (0-9), relatively desirable (10)(11)(12)(13)(14)(15)(16)(17)(18)(19), and desirable (20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30). We used Cronbach's alpha to evaluate the scale's reliability, which was approved with a score of 0.86.…”

Psychometric evaluation of the traditional Chinese version of PedsQL™ 3.0 cardiac module scale in adolescents with congenital heart disease: reliability, validity, measurement invariance, and adolescent-parent agreement

“…Adolescents with CHD are prone to poorer HRQoL in that they are learning to take responsibility for self-care and might struggle with difficulties such as uncertainty about the future, how to build self-esteem, and use coping strategies [ 8 , 9 ]. Although a high score of HRQoL can indicate successful management of disease burden for these patients [ 10 ], it was found that the HRQoL significantly decreased for adolescents and adults with CHD in a short three-year follow-up [ 11 ]. Furthermore, a recent study across 15 countries found that these patients had lower quality of life in Asian countries [ 12 ].…”