Quality of Life and Comorbidities in Adults with Congenital Heart Disease

In a new observational cohort study, the Congenital Heart Initiative (CHI) identified generally good health-related quality of life among adults with congenital heart disease (CHD), despite a high prevalence of mood disorders and comorbid conditions. Most participants rated their overall health positively, with key differences observed by disease complexity and physical activity levels.

This study aims to address a need for detailed, multicenter data on adults with CHD, a population exceeding 1.5 million in the United States. Limited existing data restricts the understanding of long-term health challenges, mental health impacts, and healthcare needs in this group. The CHI was designed to address these gaps through a large-scale, patient-empowered digital registry that facilitates research and aims to improve clinical outcomes for adults with CHD.

Researchers conducted an observational cohort study using digital data collection from December 2020 to December 2023. Participants completed baseline and follow-up surveys every 4 months on quality of life, mental health, physical activity, and health care utilization.

The CHD anatomies of the participants (N = 4558) varied, with the most common being tetralogy of Fallot (22%), transposition of the great arteries (11%), and coarctation of the aorta (11%). Overall, 88% of participants reported at least one comorbidity, with arrhythmia (33%) and mood disorders (35%) as the most prevalent. Physical activity varied by CHD complexity; those with complex CHD were significantly less likely to meet physical activity guidelines than those with moderate CHD (χ2 = 15.9; P < .001), particularly among women. Among those completing the quality-of-life surveys, 84% rated their health as good or better, with no differences observed by CHD complexity.

This study had limitations, most notably that the researchers relied on self-reported data.

“In this cohort study of adults living with CHD, many patients reported mood disorders, but most reported good health-related quality of life,” the study authors concluded.

Reference

Leezer S, Mehta R, Agarwal A, et al. Patient-reported outcomes among adults with congenital heart disease in the congenital heart initiative registry. JAMA Netw Open. 2024;7(10):e2439629. doi:10.1001/jamanetworkopen.2024.39629