Shifting from Short-Term Outcomes to Lifelong Risk Assessment in CHD

When newborns need surgery for congenital heart disease (CHD), families typically focus on one question: Will my child survive? Answering this question is never easy, but it’s a familiar experience for many pediatric heart specialists. What can be more disconcerting are the often overlooked discussions about long-term health risks related to CHD.

“Most people with CHD now survive to adulthood, and patient priorities have shifted as survival becomes the norm,” says Sasha Opotowsky, MD, MMSc, director of the Adult Congenital Heart Disease Program at Cincinnati Children’s. “We owe it to patients and families to assess each child’s unique CHD-related risks from birth to the end of life. However, existing clinical risk models in CHD focus on a moment in time. They generally do not consider the lifelong nature of CHD. That is for good reason — it is exceptionally hard to conceptualize or quantify lifelong risk. The many interacting factors at play, from genetics to socioeconomics, make long-term personalized risk stratification even more challenging.”

JACC Statement Suggests a New Approach to Risk Assessment and Communication

The Journal of the American College of Cardiology recently published a scientific statement addressing the topic of risk assessment in CHD. Opotowsky was the lead author and worked with an international group including pediatric and adult cardiovascular clinicians, clinician scientists and individuals with lived experience. The authors included Nadine Kasparian, PhD, professor and director of the Cincinnati Children’s Heart and Mind Wellbeing Center, and Nicholas Ollberding, PhD, professor in the Division of Biostatistics and Epidemiology at Cincinnati Children’s. The statement:

• Encourages a shift in risk management that looks beyond acute cardiovascular complications toward potential end-organ outcomes over the lifespan
• Demonstrates how to use fundamental and emerging concepts in risk measurement to assess risk across the lifespan for people with CHD
• Reviews best practices for communicating long-term risks to patients and families

Communication Strategies Can Encourage Decision-Making and Engagement

Opotowsky says his research team was particularly proud of the study’s guidance on communicating effectively and empathically with families. “Physicians tend to talk in percentages and statistics, but group-based evidence is only part of the picture,” he explains. “We need to communicate the child’s personalized risks with a sensitivity to their and their family’s values, preferences, learning styles and a host of other factors.”

In the JACC statement, the researchers emphasized that successful communication involves establishing trust, fostering empathy and realistic hope, and conveying information in an understandable way. Such communication creates a foundation for collaborative decision-making, patient and family engagement, and treatment adherence.

The study shared the following best practices for effective risk communication, which include:

• Establish a supportive environment, partnering with patients and caregivers in decision-making
• Assess health literacy to help tailor information
• Use plain language coupled with written information
• Confirm understanding and reinforce key information using a teach-back approach
• Personalize risk information rather than describing only population-based risk estimates
• Use frequencies rather than percentages or probabilities (e.g., three out of 10 rather than 30%)
• Use visual aids and analogies such as diagrams and charts
• Use multimedia to cater to diverse learning styles and differing capacities for comprehension
• Use positive attribute framing and gain-framed messages, focusing on the possibilities of survival and good health versus mortality and poor health outcomes

The American College of Cardiology offers a toolkit to help clinicians with risk communication.

The Importance of Long-term Risk Assessment

The statement also tackled the challenges associated with risk measurement across the lifespan, appraising current and future risk measurement frameworks. “Currently, risk assessment studies tend to be small, so precision is low,” Opotowsky says. “In addition, existing clinical risk models in CHD generally do not consider the lifelong nature of CHD. Instead, they focus on short- to medium-term outcomes, usually in the context of a specific event associated with increased risk, like heart surgery or pregnancy.”

Opotowsky and his co-authors emphasized that there is a need for large-scale, longitudinal prospective studies to provide insight into time-varying risks associated with CHD.

Such studies would allow researchers to develop robust prediction models using emerging technologies such as advanced statistical techniques, machine learning and artificial intelligence.

(Published December 2024)

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