Social determinants of health affect care for congenital heart disease

Disparities driven by social determinants of health limit access to the lifelong specialty care needed for congenital heart disease, according to a new American Heart Association scientific statement.

The statement focuses on the impact of the social determinants of health – the conditions in which people are born and live, such as education, employment, housing, income, and access to food and safety – among people born with congenital heart defects.

Societal factors impact the ability of people born with congenital heart disease to get appropriate specialty treatment throughout their lives and particularly when they are transitioning from paediatric to adult care.

As medical and surgical treatments have improved and survival has increased, the majority of people with congenital heart disease are now adults rather than children. People with a congenital heart defect (CHD) – particularly those with complex heart problems – may require multiple operations and need specialty heart care throughout their lives.

‘Social determinants of health affect every single facet of CHD – from who is born with a heart abnormality to who is diagnosed prenatally, to outcomes of surgery, to clinical follow-up as well as transitioning to adult care,’ said the chair of the statement writing group Keila N. Lopez, an Associate Professor of Pediatrics at Texas Children’s Hospital/Baylor College of Medicine in Houston.

At the population level of care, the statement points out that while there has been overall improvement in outcomes due to advances in surgical and medical care for congenital heart defects, there has been minimal improvement in equitable access across the US to that care.

Specialty care services are concentrated in urban areas, making access difficult for those who live in rural or smaller communities. Availability of care also refers to an individual’s access to transportation and working at a job with the flexibility to have time off for health care needs, which tends to be more challenging for people with a complex disease and who have a lower socioeconomic status. Referral patterns to specialty care can also affect access to care.

A systemic look at access to care focuses on the availability and diversity of the health care workforce. Even for people who have health insurance, a lack of specialty providers is a major concern as the population of adults with CHD continues to grow. There are fewer than 500 board-certified specialists in adult congenital heart disease in the U.S., and they are primarily located at specialty heart centres in urban areas.

Although this statement is limited to congenital heart disease, the same concerns about transition to adult care apply to many other medical conditions in children.

Photo by Artur Tumasjan