MPN Second Opinions: Overcoming Barriers to Expert Care

Lisa Hatfield:

Access to specialized expertise can be a barrier. Many people with MPNs receive their care in the community practices and may not have regular access to a physician who specializes specifically in MPNs.

Like you, Dr. Abu-Zeinah, so what might consultation with an MPN specialist or an expert, when might it be particularly valuable for a patient to seek out the expert care from somebody like you?

Dr. Ghaith Abu-Zeinah:

Yes, I think that, theoretically, at any point in time, particularly now that we have telemedicine available, you know, it kind of cuts down the commute. If you’re talking about within-state consultations, some physicians are licensed out of state, they might be able to do telemedicine, depending on where you are.

So we really have that flexibility of, you know, you’re entitled to it, you’re allowed to have multiple opinions, and there are ways to do it a little more conveniently.

But when exactly to do it, you know, certainly at the time of diagnosis, it’s important that you have that clarified. You know, there might be some diagnostic challenges, or maybe inconsistencies. Some of the data might have to be even reviewed in second opinion.

If you talk about the bone marrow biopsy, you might want that, or the slides reviewed at an expert center as well, because they’re, you know, might be a kind of a refinement of that diagnosis. So, at the time of diagnosis, it’s important to establish kind of that second opinion, because even there, you get a lot of information about prognosis, about expectations, treatment goals.

And you might even start talking about a treatment plan in that early time course. For some patients, perhaps the treatment plan would be formulated, you know, a few years into the diagnosis, in the sense that treatments such as aspirin, or phlebotomy only, or observation with supportive care.

I mean, these are things that I kind of distinguish from MPN-directed therapy. I think MPN-directed therapy being drugs that are involved, or clinical trials, or even transplant for some people. I think these might be, bigger discussions that may not happen on the first visit, and may not happen in that kind of diagnostic timeframe. So that would be another landmark time point, is talking about the therapy that would be preferred and initiated and the timing of that.

And then along the course of the disease, so we talk about what are the parameters that indicate I’m doing well, what are the parameters that are indicating that it’s a suboptimal response. So, you know, along the way, you might want to check in. Even if everything looks very good, but it’s been more than a year, you might want to check in.

So, as long as you’ve established that early, and you have a good idea, and you have a good hematologist that you trust and follow with closely, you know, you’d be surprised how much we communicate with your hematologist. So, if I’m seeing a patient as a referral or an out-of-state consult, but they have their own local hematologist, you know, we get records faxed over. We have discussions kind of behind the scenes of what do you think and what should I do? So, at the end of the day, we’re still keeping an eye, but you might want to check from time to time, and I tell my patients, if it’s been more than a year, and you expect me to kind of stay, you know, on track with everything that’s happening, I probably should have a conversation with you, just to see how you’re doing, even if you’re doing very well.

It keeps you in mind. And it keeps me up to date with all the developments that I need to be able to help you. So, my [ACT]IVATION tip for this question is, establish an MPN expert, a physician consultant that you might want to speak to at different time points, particularly early on, and then during the course of therapy.