Determining Financial Impact of Postmortem Genetic Testing

The Inherited Cardiac Arrhythmia Program at Boston Children's Hospital (BCH) works to provide comprehensive care to patients and families with inherited heart conditions. In an effort to improve both medical outcomes and quality of life for patients, the program asked Healthcare Lab (H-Lab) to assess the economic value of postmortem genetic testing after sudden cardiac death (SCD).

SCD claims the lives of 300,000 to 400,000 people every year in the United States—and about 20% of cases strike victims under 40 years old. Testing can help determine if surviving family members have a genetic cardiovascular disorder, potentially lowering future screening and monitoring costs. Currently, such postmortem genetic testing is not covered by insurance. The goal of the H-Lab project was to assess the financial implications of screening and managing the families of a SCD victim—with and without such testing.

Grissel Cervantes, a doctoral student in health sciences, teamed up with MBA ’21 students Sara Gabriel and Valerie Huang to take on this project. They conducted a literature review on postmortem genetic testing and evaluated the financial impact of such testing on downstream costs for families. The team then developed a probability-adjusted decision tree model that BCH can use to explore clinical pathways, costs, and outcomes.

The work revealed strong financial incentive for payers to cover the cost of postmortem genetic testing in the United States, since postmortem genetic testing after SCD can lead to meaningful cost savings in most cases. The hospital plans to expand this work with colleagues around the world to provide a more comprehensive picture.

“The work the team performed showed this was a cost-effective strategy based on US healthcare costs—this is not just beneficial to Boston Children’s Hospital but to all cardiologists, physicians, and medical examiners in the US (and potentially elsewhere) who are involved in the management of sudden and unexplained cardiac death, and ultimately to the families affected by these tragedies,” says Dr. Dominic Abrams, Director of the Inherited Cardiac Arrhythmia Program. “Ultimately we hope to demonstrate this is cost-effective to payers (private insurers or governments) and change national policies around the use of genetic testing following sudden death.”

Members of the student team say they learned that impact in healthcare often goes beyond the costs that can be synthesized in a model. “We were able to build a robust financial model to make the economic case for postmortem genetic testing, but that only told part of the story as it is nearly impossible to quantify the psychological impact this testing can have on families,” says Gabriel, noting that the team also outlined many of the intangible costs and benefits of testing, such as the psychological well-being of relatives. “While non-financial impacts will never convince payers, they are important aspects to consider when making decisions.”