One of the first questions that patients often ask when they enter the list for a transplant organ is, “How long will I be waiting?”
It’s a simple question with complex answers. Waiting times may be described differently depending on the context and the provider, which for patients can translate to a lot of uncertainty.
In a recently published editorial, Jesse Schold, PhD, director of transplant outcomes and policy in the Colorado Center for Transplantation Care, Research, and Education (CCTCARE) and associate vice chair of policy and outcomes for the University of Colorado Department of Surgery, highlighted the need for greater consistency in the terms used to define and discuss waiting time.
“In practice, there’s a lot of heterogeneity in how we talk about a term that can have very significant implications for patients,” Schold says. “It’s really important that we get the language correct, given that we have a highly variable population in terms of health literacy. We need to be working for greater consistency in talking about waiting times in a way that is meaningful to patients.”
Defining waiting time estimates
Many of the differences in estimated and actual waiting times stem from mathematical and statistical calculations used at different points in the transplant process and to describe various scenarios. Because estimates of waiting time can vary by statistical approaches, Schold emphasizes the need to unite around standard language describing those times.
“The way we describe it in statistical lingo are competing risks,” Schold explains. “If you look at the time to a given event such as an organ transplant, that can be affected by patients who drop off the list for various reasons – some are removed from the list, some die, some actually see improvements in their health, some transfer to different centers. Each of these events can modify the estimated wait time for a transplant.”
Also, because transplant waiting times are based on estimates, there is always going to be a degree of uncertainty in enumerating a wait time, Schold says, “but if estimates are years different, depending on the factors being considered and the statistical analysis being used, then that is certainly very meaningful. So, I think a related recommendation we as a transplant community need to consider is at least documenting how estimates were derived.”
More patient-centric language
A significant factor in answering the question “How long will I be waiting?” is that estimated waiting time for a prospective organ transplant is longer than average waiting times for patients who received a transplant, Schold says. Further, median estimates of waiting time assume that all patients on the list will eventually receive a deceased donor transplant, which isn’t accurate.
“There may be some inherent bias to be more optimistic in estimating and discussing wait times, so it’s really important that we’re being consistent in the terms we use to help establish realistic expectations for patients,” Schold says. “The waiting times we’re giving patients can affect their decision making. Patients who have longer or shorter waiting times to transplant may then have different motivations to seek a living donor transplant, which is an alternative treatment modality.
“A good example of this comes up in kidney transplantation. Patients have the option to consent to receive relatively higher-risk organs, which can still provide survival benefit, but that decision calculus of whether to receive a relatively high-risk organ is often largely based on how long they would have to wait for an ideal deceased donor organ.”
A significant benefit to the field of transplantation, Schold adds, is that federal mandate requires that detailed information be gathered for every transplant candidate and recipient in the United States. Therefore, data can be analyzed as broadly as the entire country, or as specifically as, for example, outcomes for a specific blood type for a particular organ at one transplant center.
“Because we have these very well-known resources and this common body of data, I feel really optimistic about what we can do to make our language more consistent and patient-centric,” Schold says. “I understand the intent of the different language that’s used to describe waiting time estimates, but for lay people coming into this conversation, it can just be confusing. I think there’s a recognition in transplantation and more broadly in health care that we need to do a better job of disseminating information in a meaningful way.”
National and international transplant organizations can play a significant role in guiding the field toward more precise language, Schold says, initiating conversations at conferences and other gatherings of clinicians and researchers.