Health‐Related Quality of Life in Adults With Congenital Heart Disease: A Population‐Based Study

Background As survival into adulthood improves for patients with congenital heart disease (CHD), quality of that survival is paramount. We assessed health‐related quality of life (HRQL) in a large adult CHD cohort. Methods We studied 868 participants from a multicenter registry with complete Pediatric Quality of Life Inventory 4.0 Generic Core Scale and covariate data. Analyses followed 3 stages: CHD complexity across HRQL score bands, predictors of worse or better HRQL, and predictors of HRQL in severe CHD. Results Pediatric Quality of Life Inventory total scores were high (median 76.1, interquartile range 64.1–87.0), highest in Social functioning, with longer lower tails for Emotional and Psychosocial scales. Severe CHD was over‐represented in the lower and under‐represented in the upper 15% bands (Total HRQL: P <0.001). At the 15th percentile, worse HRQL was linked to severe CHD (−5.9; 95% CI −11.6 to −0.1), poor transition support (−11.2; 95% CI −18.6 to −3.9), mood disorder (−12.7; 95% CI −18.3 to −7.1), and diabetes (−16.6; 95% CI −29.9 to −3.3); at the 85th percentile, to severe CHD (−5.2; 95% CI −9.2 to −1.1), mood disorder (−7.3; 95% CI −11.7 to −3.0), anxiety disorder (−5.6; 95% CI −9.7 to −1.5). In severe CHD, poor transition support and mood or anxiety disorders (odds ratio [OR] 0.48, 0.30, and 0.36, respectively; P =0.01) markedly increased the odds of worse HRQL. Very well‐supported transition (OR 1.91) was associated with better HRQL. Conclusions In adult CHD, anatomic complexity contributes modestly to HRQL extremes. Modifiable predictors (transition experience, mental‐health comorbidity, location, and diabetes) emerge as key targets to improve HRQL.