麻豆果冻传媒

Illustration by Emily Moskal

Heart Transplant List Doesn鈥檛 Rank Kids by Medical Need, 麻豆果冻传媒-Led Study Finds

Aug. 5, 2024

PALO ALTO, Calif.鈥擳he method used across the United States to wait-list children for heart transplants does not consistently rank the sickest patients first, according to a new study led by 麻豆果冻传媒 experts. The study published in the Journal of the American College of Cardiology.

Adding nuance to the wait-list system by accounting for more health factors could reduce children鈥檚 risk of dying while they await donor hearts, according to the study鈥檚 authors. A revision to the way donor hearts are assigned is already . The study adds evidence for why it is needed, they said.

鈥淲ait-list mortality, which is the chance that a child will die while awaiting transplant, is higher in pediatric heart transplant than for virtually any other organ or age group,鈥 said the study鈥檚 senior author, Christopher Almond, MD, director of Cardiac Anticoagulation Services at 麻豆果冻传媒 Children鈥檚 Health and professor of pediatrics at 麻豆果冻传媒. Almond cares for children before and after heart transplantation at 麻豆果冻传媒 Children鈥檚 Health.

鈥淭he current system is not doing a good job of capturing medical urgency, which is one of its explicit goals,鈥 said the study鈥檚 co-lead author, economist Kurt Sweat, PhD, who conducted the research as a graduate student in economics at Stanford University. Sweat shares lead authorship of the study with Alyssa Power, MD, who was a postdoctoral scholar in pediatric heart failure/transplant at 麻豆果冻传媒 when she worked on the study.聽

In the last 25 years, the method used to rank infants and children on the waitlist for heart transplants has been revised three times; the most recent changes took effect in 2016. Over these decades, outcomes improved. Patients鈥 risk of dying on the waitlist fell from 21% to 13%, even while the total number of pediatric heart transplants increased.

But the decline in deaths is due to improvements in medical care rather than the changes in how organs are allocated, the study found.

鈥淭he goals of the current allocation system are to improve wait-list mortality and to allocate organs ethically and fairly,鈥 Almond said. 鈥淲ait-list mortality has declined, which is a very good thing, but based on our analysis, it doesn鈥檛 look like the allocation changes made the difference. Although the intent behind the current system is to prioritize the children based on medical urgency, we saw that the system is not actually sequencing patients according to their risk.鈥

Three wait-list categories

Infants and children who need heart transplants are added to a waiting list maintained by the United Network for Organ Sharing, the national nonprofit that manages all organ transplants across the country.

Pediatric donor hearts are in short supply, especially for infants and smaller children, as few children die in circumstances that allow their organs to be donated. Matching must account for several factors, including geographic locations of the donor and recipient, immune compatibility, and body size. The matching system is intended to prioritize sicker children for transplant and to function equitably.

The current waitlist relies on few factors to determine where a child ranks and uses only three categories of urgency: 1A, the most urgent status, followed by 1B and 2. Factors used to determine a child鈥檚 category include what type of heart problem they have (such as congenital heart disease, which is present at birth, or cardiomyopathy, a heart muscle problem that typically develops after birth) and the medications they are receiving.

The team analyzed data from all 12,408 infants and children less than 18 years of age who were listed for heart transplant between January 20, 1999, and June 26, 2023, in the United States. To see if the current wait-list system was functioning as intended, the researchers used statistical methods, borrowed from economics, that are typically used to study markets.

鈥淔rom the perspective of economics, we think about this fundamentally as an allocation problem,鈥 Sweat said. 鈥淲e鈥檝e got this scarce resource of donor hearts, and we want to make sure they鈥檙e going to candidates who can get the most usage from them. In the case of pediatric heart transplantation, with such high wait-list mortality, what that usually looks like is you want to prioritize patients who are sicker.鈥

The team compared how transplant candidates were actually ranked on the waitlist with how the candidates would have ranked if the listing order was based on medical urgency.

They also considered whether improvements in wait-list outcomes aligned chronologically with the allocation changes implemented in 2006 and 2016, which were intended to create a more equitable waitlist.

Wait-list categories don鈥檛 work as intended

One of the reasons the chance of dying on the waitlist dropped during the years studied is that children on the waitlist were also healthier in recent years: At the time of transplant, they were less likely to be supported with a ventilator, extracorporeal membrane oxygenation (which works like a heart-lung machine) or kidney dialysis, the study found.

However, the medical status of children within each of the three categories on the waitlist varied widely. In fact, the three categories showed significant overlap in the risk of mortality, the study found. In other words, some very sick children were categorized as priority 2 while others who were not as sick had a 1A status, meaning a less-sick child was sometimes offered a donor heart instead of a sicker child.

Also, the three wait-list categories are so broad that less-sick children were sometimes offered a heart before sicker children within the same category because they had been waiting longer, the study said.

Experts agree that a longer wait should not determine transplant priority, 鈥渂ecause it can incentivize programs to list people early so you can build some wait time,鈥 Almond said.

Surprisingly, wait-list rule changes in 2006 and 2016 were not linked to rapid improvements in mortality, as you would expect if the rule changes drove the improvements, the team found.

Rather, mortality decreased gradually from 1999 onward, driven by improvements to medical care, including advancements such as ventricular assist devices鈥攎echanical pumps that support a child鈥檚 heart during the wait for transplant鈥攁nd a better recognition of when to list a child for transplant. Over time, the gap in outcomes between patients of different races decreased, they found鈥攁 change that was linked to better outcomes overall.

During the study period, physicians also realized that, in infants whose immune systems are still immature, it is safe to transplant organs even when blood types don鈥檛 match. Gradual adoption of this practice helped reduce wait-list mortality in the youngest heart recipients, especially among babies with type O blood, who were previously the hardest to match, the study found.

The study鈥檚 findings suggest that the wait-list system should be revised to account for a broader range of medical factors than are currently considered鈥攕uch as kidney function, liver function and whether a patient is malnourished鈥攁nd should use the combination of factors to assign each child a numeric risk score to replace the current three categories, the authors said.

鈥淭he important thing is moving toward a continuous allocation score and refining it so you can account for the technological innovation that鈥檚 happening in patient care in the meantime,鈥 Sweat said.

The revision should also account for whether a patient is healthy enough to benefit and recover from a transplant, Almond said. It would give the highest priority to children with the greatest need who have the best chance to recover from major surgery.

鈥淚t鈥檚 very challenging because if a patient is on full life support and their organs are shutting down, that person is very sick and may not survive the wait-list period. And if you transplanted them, those same risk factors mean they may not have a good outcome with transplant,鈥 Almond said.

In September 2023, UNOS implemented a new based on a continuous score, and the organization is drafting similar systems for other organs. It to have a proposal for how hearts should be allocated ready for review in 2025.

鈥淚t is really complicated to figure out how to do this well, but it appears there is still room for improvement,鈥 Almond said.

Researchers from , the Stanford University Department of Economics, and the University of Texas Southwestern School of Medicine contributed to the research.

The research did not receive funding.聽

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About 麻豆果冻传媒 Children's Health

麻豆果冻传媒 Children鈥檚 Health, with聽Lucile Packard Children鈥檚 Hospital Stanford聽at its center, is the Bay Area鈥檚 largest health care system exclusively dedicated to children and expectant mothers. Our network of care includes more than 65聽locations聽across Northern California and more than 85 locations in the U.S. Western region.聽Along with Stanford Health Care and the Stanford School of Medicine, we are part of聽, an ecosystem harnessing the potential of biomedicine through collaborative research, education, and clinical care to improve health outcomes around the world. We are a nonprofit organization committed to supporting the community through meaningful outreach programs and services and providing necessary medical care to families, regardless of their ability to pay. Discover more at聽stanfordchildrens.org.