Change in health-related quality of life in CHD from childhood to adulthood over a decade: The multicenter European QUALIDECADE cohort study

Abstract

Introduction

Medical advances in the management of congenital heart disease (CHD) have shifted the focus from mortality to life-long morbidity, with a stronger attention on patient-reported outcomes. Health-related quality of life (HRQoL) has been increasingly used as primary outcomes in cross-sectional or randomized controlled trials in CHD, however few cohort studies have measured the change in HRQoL over significant periods of time. This study aimed to prospectively measure HRQoL in CHD from childhood to adulthood over a decade and identify the predictors of HRQoL in this population.

Method

A multicenter cohort of 282 children with CHD was prospectively followed from 2012 to 2022 in three European tertiary care centers. The baseline HRQoL and clinical data were previously reported (https://doi.org/10.1007/s00246-015-1201-x). Ten years after patient enrolment, HRQoL and clinical data were collected again. Change in HRQoL using the PedsQL™ 4.0 generic instrument during the 10-year follow-up and predictors of HRQoL at 10-year follow-up were assessed, with adjustment on sex and age, and using multivariate analysis.

Results

From the baseline population of 282 children with CHD (mean age 12.3 ± 3.0 years, sex ratio 1.9), 121 patients (mean age 21.3 ± 2.7 years, sex ratio 1.4) participated in the cohort study (mean 9.9 ± 1.5 year follow-up). Overall, HRQoL scores remain stable over a decade, with a mean 78.1 ± 15.9 total score in young adults (mean change of 0.9 ± 16, P = 0.55). However, HRQoL scores were 10-points lower in female patients than in males (73.3 ± 16.2 vs. 83.6 ± 14.7, P < 0.001) and increased in men during the follow-up (+3.5 ± 13.1, P = 0.03 and +5.0 ± 11.7, P < 0.001, in total and physical scores, respectively). Apart from gender, baseline predictors of poorer HRQoL at 10-year follow-up in multivariate analysis were physical deconditioning (low ventilatory anaerobic threshold), repeated cardiac catheter interventions, angiotensin-converting enzyme inhibitors, and anticoagulants.

Conclusion

Overall HRQoL in CHD remained stable from childhood to early adulthood over a decade of follow-up. However, HRQoL decreased with time in female patients, with a large magnitude of the difference with males at 10-year follow-up. Based on the modifiable predictors of HRQoL identified in this study, early cardiac rehabilitation could improve aerobic fitness and increase HRQoL in youth with CHD, especially in female patients.