A recent article published in JAMA Network Open casts new light on the life quality and health outcomes of adults with congenital heart disease (CHD), offering essential revelations from the Congenital Heart Initiative (CHI) registry. The paper, with Ochsner Health’s paediatric cardiologist and adult congenital heart specialist, Thomas Young, MD, as one of its authors, brings critical data to the fore.
In the United States, the population of adults living with CHD exceeds 1.5 million, underlining an urgent requirement for detailed research and improved clinical practices. The CHI registry, a digital platform accessible online, plays a pivotal role in this area by gathering patient-reported outcomes (PROs). This initiative promotes multicentre research and provides critical insights that enhance the understanding and management of CHD in adults.
The study utilises data from over 4500 participants, making it the most significant US registry encompassing adults with CHD. It covers a broad array of CHD subtypes. The study showed that 84% of participants assessed their health-related quality of life as good or better despite the varying complexities of their CHD conditions. However, it was noted that those with more complex CHD forms were less likely to adhere to standard physical activity guidelines. The research also brought to light a high incidence of mood disorders among the cohort, though a majority still perceived their overall health-related quality of life positively.
Dr. Young commented on the historical progress in the field, noting, “Over several decades, we’ve observed substantial advancements in diagnostics and surgical techniques, resulting in many CHD patients now living into adulthood. Yet, the pace of research into long-term outcomes for this group hasn’t matched these advances, partly due to the absence of a dependable registry system.” He elaborated on how CHI is now filling this gap, providing deeper insights into clinical outcomes that will likely enhance the life quality and health results for more patients with CHD moving forward.
This research emphasises the value of patient-reported outcomes in comprehending and ameliorating the health and life quality of adults with CHD. The findings from this study will guide future research and targeted interventions, aiming to boost the health-related quality of life for this patient group further.
More information: Thomas Young et al, Patient-Reported Outcomes Among Adults With Congenital Heart Disease in the Congenital Heart Initiative Registry, JAMA Network Open. DOI: 10.1001/jamanetworkopen.2024.39629
Journal information: JAMA Network Open Provided by Ochsner Health System
