PRO Data & Support for Patients With Cold Agglutinin Disease

Payer considerations regarding the measurement of treatment outcomes for patients with cold agglutinin disease, and resources available to help support patients through their care continuum.

Neil Minkoff, MD: Let me bring Dr Stephens in and look at this from the point of view of the payer. I’m assuming that you have similar goals. You want to see the patient get better and be able to resume their ADLs [activities of daily living], and the example was to go out to eat in cold weather. We all like to do that. I live in the Boston area. If I’m not able to eat in cold weather, I wouldn’t go out to eat very much. I get that. But when you’re looking at it in terms of management from a payer point of view, are there differences in the way that you would measure success than what we heard from our clinician friends?

Kevin Stephens Sr., MD, JD: No, we work in conjunction with the clinicians. Our goal is to have a healthy patient and great outcomes, particularly with the commercial line of business. If people don’t feel well, they don’t work, and if they don’t work, that’s a big problem in many aspects. We want people to feel better, to be functional. We’re also looking at chronic disease management. I can’t overly emphasize this: you can’t do sporadic, episodic management. This is a chronic disease. We have to look at it over the life span, the course of a person’s life. That’s when we start to look at all the little things—the ones mentioned earlier—quality-of-life indicators and see.

We have a tremendous amount of staff that we have dedicated. We call them case managers and disease managers. People call them all different things. They’ve been tasked to help patients who have chronic illnesses first make sure they understand. Because many times when they go to providers, they feel rushed, they don’t want to take the time, and they say something and don’t really understand it. We on the back end make sure they have a thorough understanding of the disease process. That way, they can take ownership in it. Then, we can help them have healthier lifestyles so that as they progress through it, they know their symptomatology, can act early, have early intervention—those kinds of things. We work in conjunction with providers to provide additional outpatient support. We call it the social determinants of health. But there are other things we do in case management: making sure they have their medication if they have any, making sure that they have their appointments, and making sure that they re-engage if the appointment is canceled. They have the whole, as we call it, wellness exam, because you don’t want to pay so much attention to CAD [cold agglutinin disease] that you miss a coronary artery disease, a cholesterol issue, or other things that could be going on with it. Those are the kinds of things we do.

Neil Minkoff, MD: We mentioned some of the outcome measures earlier, like FACIT-F [Functional Assessment of Chronic Illness Therapy—Fatigue] and things like that. Do either of you—on the clinical side or on the payer side—use those tools as part of the management? Or are they more academic for research purposes?

Jeremy Lorber, MD: For me it’s more the latter. Outside of a clinical trial, they tend to take more time on our end, and I find directly speaking with the individual patient is the way I do it.

Mihir Raval, MD, MPH: If the patient knows—the FACIT-F works if you do that more sequentially, so you have to do that at the start of the treatment—then you have to do that more periodically. It becomes more objective. Sometimes the patient, when they think about it, may report out a different outcome from what they actually mean. Having that physician-patient relationship may get you more information. Of course, a validated tool always adds more information in physicians’ day-to-day practice. But having the physician-patient relationship definitely goes a long way.

Kevin Stephens Sr., MD, JD: We don’t pay attention to that as much because that’s on the clinical side, and our goal is not to get between the patient and their provider.

Jeremy Gleeson, MD: Yes, and it’s pretty common in most disease states that those very structured scales have much more of a place in clinical trials where trying to get a subject information into an objective format is perhaps more critical. I don’t think they’re used routinely in clinical practice, and certainly payers probably aren’t going to look to those scales.

Transcript edited for clarity.

Related Videos
View All
© 2023 MJH Life Sciences
All rights reserved.