Evaluating Pediatric Heart Transplant Center Performances: Unintended Consequences and a New Way Forward

The practice of flagging pediatric heart transplant centers for low performance may have unintended negative consequences, conclude the authors of a recent Cleveland Clinic-led study. The findings were published in the Journal of Heart and Lung Transplantation.

The link between center evaluations and listing behaviors

Since 2007, the Centers for Medicare and Medicaid Services (CMS) established a one-year post-transplant outcome metric that if not met could lead to centers being “flagged.” The result? Potential loss of insurance funding from both CMS and private insurance agencies.

Previous studies have shown that among adult patients waitlisted for liver and kidney transplants, there is an association between low center performance evaluations and a corresponding decline in transplant volumes. However, the effects of low center performance evaluations on pediatric heart transplant center behavior have not been assessed, which was the intent of this published study.

Using the Scientific Registry of Transplant Recipients and Program Specific Reports data from January 2009 to June 2018, the team examined changes in center listing and transplant volumes and also changes in recipient and donor characteristics in response to being “flagged.”

Shahnawaz Amdani, MD, a pediatric heart failure/transplant cardiologist at Cleveland Clinic Children’s and first author of the study explains, “We assessed changes in center behavior at four time points: one year prior to the flagging, at one and two years after centers were flagged and at the end of our study period,” he says.

Notable findings

They found that the flagged centers were more likely than non-flagged centers to have a decrease in candidate listings. But, Dr. Amdani, explains, this wasn’t immediately the case. In the first and second years, the difference was negligible. However, by about three-to-six years after receiving the flag, the flagged center’s volumes had decreased.

“The question we should be asking as transplant professionals is ‘What is happening to the patients? Are they not getting listed or transplanted? We have no way of measuring that,” he says.

Secondly, the study found that flagged centers had immediate declines in listing for high-risk patients, such as those with restrictive cardiomyopathy, renal dysfunction, on mechanical ventilation, extracorporeal membrane oxygenation and those requiring re-transplantation in the first few years after they receive the flag. This highlights the possibility that centers may become risk-averse once flagged because they do not want to put their program in further jeopardy.

He acknowledges that these are correlative, not causal findings. “We can’t say with complete confidence that flagging practices are leading to these center behaviors; but, it’s important to note that this has been demonstrated in cases of adult liver and kidney transplant,” he says.

Jesse Schold, PhD, the senior author of the study, is the Director of Outcomes Research in kidney transplantation at Cleveland Clinic and is a leading authority on how public performance reporting affects center behavior.

5 strategies to shift the focus from being punitive to improving access to transplant

Dr. Amdani and the researchers propose five ways to improve upon current center evaluation metrics. They are as follows:

• Implement an expanded metric that takes into account a center’s waitlist mortality, waitlist times, transplant rates, donor organ acceptance rates, and a longer post-transplant period.
• Standardize flagging criteria across all regulatory bodies, including CMS, Membership and Professional Standards Committee and private insurance companies.
• Integrate patient-reported outcomes, which are essential, and yet under-utilized in this context.
• Enhance risk-adjusted models to ensure they accurately reflect patients’ acuity.
• Link SRTR data to pediatric administrative, clinical and surgical databases to bolster data collection used to assess risk and enhance post-transplant outcomes.
• Invest in programs and resources that promote a collaborative and non-punitive culture in transplant center evaluation.
• Systematic data collection of the referral and evaluation processes prior to listing to better understand why patients may not be placed on the waiting list and which populations are not being referred at all.

Concluding, he notes, “The aim of all transplant professionals and governing bodies is to ensure that all children with end-stage heart failure in need of a heart have an opportunity to get to a transplant. While correct oversight is essential to ensure this important resource – the donated organ is utilized and cared for appropriately – there are clearly opportunities for improvement.”