Table 3.
Exemplar quotes pertaining to the transition between waitlist registration and waiting period
| Theme | Exemplar Quote |
|---|---|
| Successfulness and fairness of the LAS | 6. “The score is something that I think we’re all cognizant of in the back of our minds, but it’s not necessarily a factor to say someone should or shouldn’t be a candidate. Because the LAS is almost a byproduct, right? Someone has to be a transplant candidate, then they get the LAS score for whatever it is […] The LAS will be just whatever it is based on the specific tests of that patient.” [pulmonologist] |
| 7. “If someone’s disease advances and they end up on mechanical ventilation or something like that, their LAS goes through the roof, and they’re going to get an organ. So in many ways, the LAS mitigates survivor bias.” [pulmonologist] | |
| 8. “Yeah, it [survivor bias] is a concern. And it actually is a concern that I primarily have in regards to patients that have a relatively low score at the time of listing, especially patients with emphysema. You know, since the lung allocation score favors patients with interstitial lung disease, patients with emphysema usually get a lower score. And we certainly have a number of patients on our waitlist where I kind of wonder, ‘are they ever going to get lungs?’ And, you know, are they eventually going to be too old, or are they going to develop comorbidities that would prevent them from being suitable for transplant anymore?” [pulmonologist] | |
| 9. “Everybody is trying to get an angle for their own patients, you know, everybody feels responsible to find a strategy for their patient to get the transplant. So, they’re gonna think of things that they can do that are, in general, are almost always, I think, are honest and have integrity. I don’t think people cheat in any substantial degree, I guess, but they will use every honest angle that is available. We see that in all of our lists. But that’s what you want your doctor to do for you, right? We assume that we’ll be audited, so anything we do, we want to be able to justify and explain why or that we were completely honest with how we did it.” [surgeon] | |
| 10. “At [previous transplant center], we had this requirement that you had to be able to walk 1,000 feet in 6 min to qualify for listing. So we would give them as much oxygen as they needed, and we would push them to walk really far. And then when they changed the LAS algorithm and we saw, like, all…that, like, these patients, these people who are really, really sick, with really advanced lung disease, their scores went down significantly, and we weren’t getting offers for them anymore, then we had to change how we did it. And we had the resources there to say, ‘Okay, we’re going to do an LAS 6-minute-walk test’, which is where we did a 6-minute-walk test based on their resting oxygen requirements. But then, we would continue to do a 6-minute-walk test to assess their functional capacity. And so we would have both pieces of information, which was helpful, and then we’d use the LAS 6-minute-walk to put into a unit. Here, we don’t have those kinds of resources to be doing it twice. And so we just accept the fact that, well, we do it on something sort of in the middle and try to interpret the data as best we can.” [pulmonologist] | |
| 11. “I think the [LAS] score is reasonable, but how people populate their lists is very variable, and my concern is that people lean on the score as being a vetted, objective, consistent measure of priority, and it’s not. People will use different variables to their advantage, and listing practices are so variable that we can’t assume that an LAS of 40 means the same thing at different centers. In fact, we’ve seen patients who go to different centers have very different lung allocation scores. And when you have variability in interpretation of how to score someone, it makes the concept of broader regional sharing grossly unfair and vulnerable to gaming. This big push for broader regional sharing has to be predicated upon making listing behaviors entirely consistent across the country, or there will be gross iniquities manifest.” [surgeon] | |
| 12. “Well, the [program-level] metrics are grossly imperfect. And the reason is that there are centers that will only list one patient who is size and blood type available in a given range, a given sort of size and blood-type parameters. We don’t do that. So, we...if someone meets criteria and is listable, in a practical and medically appropriate sense, they get on the list. So, we run a large list and a pared-down list, and we do that to maintain a sense of connectivity and consideration of everyone who’s on our list. The problem is, the metric that you’re talking about is called the transplant rate, and it’s not only determined by how many transplants you do, it’s determined by the size of your list. So if I do a hundred transplants, and my transplant list is 100 patients long, I’m going to look like I’m less busy than someone who maintains a list of 10 patients and does 20 transplants per year. So it’s… it’s… It’s a thing that gets often manipulated, and it’s not an indication of how busy or aggressive a center is doing, but it’s related to more the size of that list. It’s called a gameable statistic.” [surgeon] |
Definition of abbreviation: LAS = lung allocation score.