Bloodwork in Rheumatoid Arthritis Care: What Do Patients Know?

Dr Ben Nowell, of the Global Healthy Living Foundation, discusses his abstract from EULAR 2023 on results of a patient survey on what blood tests reveal about rheumatoid arthritis activity and medications.

W. Benjamin Nowell, MD, is director of Patient-Centered Research for the Global Healthy Living Foundation and CreakyJoints.

Reference:

Nowell WB, MSW, Venkatachalam S, Kelly Gavigan K, et al. Patient perceptions of rheumatoid arthritis blood work: a cross-sectional survey in the ArthritisPower registry. Arthritis Care Res. Published online June 29, 2023.  https://onlinelibrary.wiley.com/doi/abs/10.1002/acr.25187

TRANSCRIPT

RALN:

Any views and opinions expressed are those of the authors and/or participants, and do not necessarily reflect the views, policy, or position of the Rheumatology and Arthritis Learning Network or HMP Global, its employees, and affiliates.

Welcome to this podcast from the Rheumatology and Arthritis Learning Network. I'm your moderator, Rebecca Mashaw, and I'm very pleased to be talking with Dr. Ben Nowell with the Global Healthy Living Foundation about an abstract he presented at EULAR this year that has to do with patient perceptions of rheumatoid arthritis tests. Thanks for joining us today, Dr. Nowell.

Ben Nowell:

It's a pleasure to be here. Thanks for inviting me, Rebecca.

RALN:

Your stated objective for this study was to see how patients perceive RA-related lab testing, and their perceived utility of a blood test to predict treatment response to new medications for rheumatoid arthritis. Why did you decide to research this issue?

Ben Nowell:

Our research infrastructure really builds on that initial online community of CreakyJoints, and then about 8 years ago, we launched ArthritisPower. It's our patient-powered research network, a research registry that has now more than 40,000 participants and people sharing data regularly, patient reported outcome measures, how they're doing, medication and medication changes, and so forth. So we hear from patients a lot just anecdotally, honestly, that lab tests are important and they understand the numbers in different ways. So if you're talking to someone living with RA, they might say, "Well, I'm seronegative," which means their rheumatoid factor came back negative. So we know it's important for patients when they're thinking about identifying themselves or their diagnosis.

And then as part of their ongoing monitoring of their treatment and the disease activity, they'll also refer to different numbers as well. It might be their CRP or their sed rate, but they are familiar with those numbers and they're also familiar with other things like tracking for medication side effects. So patients are curious and know enough about them, obviously, to ask questions, to speak about them when they're talking to one another. So we really wanted to get some data on this because when I looked in the literature in RA, there was just absolutely nothing from the patient's perspective talking about how patients or how people living with RA think about and understand their lab results.

I'll also add that because we're in an era now where biomarkers are becoming more available and important as a way of diagnosing and being able to predict treatment outcomes, even being able to differentiate different types of the same disease can in turn help guide decision-making about treatments. We also wanted to get some data from patients about how they feel about that and then what they would value in a test that might predict treatment response for a medication in RA.

RALN:

Would you give us a brief overview of your study?

Ben Nowell:

We did a one-time survey, and this was in our ArthritisPower registry. We invited patients to take this survey online. In order to be eligible to take the survey, they had to have a diagnosis of rheumatoid arthritis, and they also had to have taken at least one DMARD—disease-modifying antirheumatic drug— for their rheumatoid arthritis. It did not have to be an advanced therapy like a biologic, but at least they needed to have taken methotrexate or some other conventional synthetic DMARD.

So it was a one-time survey, 27 items, and we asked about patient's perceptions of RA-related blood work. We also included a choice-based conjoint analysis of how patients value different attributes of a blood test to predict response to RA medication in the hypothetical. So it wasn't about any particular blood test, just the hypothetical blood test that did this. What would they want to see in that blood test, and what are the elements of it that they would value relative to the other elements? And then we also asked some basic questions, clinical characteristics like PRO data and demographic data from the patients as well.

RALN:

How many people responded to the survey?

Ben Nowell:

So we had 405 people complete the survey. The majority were White women with a mean age of around 58 years old, which was the number that we needed. The 400 or more was what we needed in order for the choice-based conjoint analysis to return good results that would give us the information we wanted to know about the relative value of different attributes for that hypothetical blood test to predict treatment response.

RALN:

And the profile that you just gave about White women in their late 50s, that's consistent with the majority of patients with RA?

Ben Nowell:

It is. We tend to skew even more female and even more white than the US population of people living with rheumatoid arthritis. But in general, yes, although we wouldn't claim that this survey is totally representative, we think it gives a pretty good idea of where patients are coming from on this.

RALN:

What did you find out?

Ben Nowell:

Well, we learned some interesting things. 82%, 81%, 86% or so of patients perceived pretty accurately that their rheumatologist is ordering lab work to check for active inflammation and also to assess for potential side effects of medications. So by and large, on the big picture, patients really were aware, that's what the point of that lab work. We asked them, "Which do you think your physician is using to monitor your rheumatoid arthritis?" And about 80% of patients put the CBC or the complete blood count test as the one that they thought their physician was mostly using. That was followed pretty close by liver function test, kidney tests, or the complete metabolic panel. About 77% of patients thought that was mostly used by their physicians to monitor RA. And then lower down a little bit as CRP and sed rate.

Then we also asked what they perceive their physicians to be using as a lab test if they're considering changing medications. And what's interesting there, there was not a majority at all. It was kind of all over the map. But the answer item that got the highest percentage at 48%, 49% of respondents was none, or I don't know. So this was pretty interesting that patients didn't have a strong sense that their physician was actually using a lab test to make a decision to help inform that decision about changing medication.

So finally, we asked what patients perceived to be useful for themselves to understand their own disease activity. And again, there was no clear majority, but 48.6% or 49% of patients, which was the most, felt that the C-reactive protein or CRP was what was helpful to them in understanding RA disease activity. And that was followed not behind by the ESR, the sed rate, 43%.

What's important to note here, I think, is that from the rheumatologist's perspective, who's obviously working with the patient to make decisions about care and treatment, blood tests are important, but they're certainly not the most important part of a patient's profile. I think that's another reason we did this survey is that it's not like a disease like diabetes where your blood tests are everything. Rheumatologists use, and patients also use, more than just a blood test to determine how it's going with the disease. There's things like the clinical exam for patients. There's patient-reported outcome measures, how they feel. Over time there might be radiographic or imaging data. So lab tests are just part of the picture in understanding what's going on with disease activity and to make treatment decisions. So it's not perhaps that surprising that there wasn't a strong consensus somewhere in patients about what was being used by physicians to change medications.

We also found, and I think this is really important data to have out there, is that patients really, a majority, 91%, worried that their current RA medication would eventually stop working, and 82% felt they worried that they would waste time trying a new medication that may not work for them. So that's why I think it's interesting to note that nearly 90% of patients were very or extremely interested in being able to take a blood test to help predict whether RA medication would work for them, like a particular medication. So I think that's important. I think a lot of RA patients, when you speak to them anecdotally, express some worry and frustration about this. I think they feel like being able to know or have more confidence that a blood test would provide as they're starting a new medication is really a big deal.

Among the attributes of this hypothetical blood test to predict treatment response being accurate, so having results of that blood test that were highly accurate, that was by far the most valued attribute over and above the cost of it out of pocket and the additional wait time it might carry to have that done. And by highly accurate, just meaning that you're improving the chance the medication will work from like a coin toss, like a 50% chance, 50/50 chance it'll work versus not work, to something closer to 85% to 95% chance. So they wanted more confidence that their medication would work and they wanted the accuracy that would tell them that.

RALN:

How accurate were their perceptions about the tests that their rheumatologists were using, the CBC, the metabolic panel? Did they hit those numbers pretty accurately or are the rheumatologists in fact looking more carefully at things like CRP and sed rate?

Ben Nowell:

I think patients by and large did really pretty much understand that the most important thing that their physician is looking at is assessing for side effects or potential side effects of medication and making sure that the lab readings were still okay. And I think, again, if you talk to physicians about these results or when I've spoken to physicians about them, they emphasize that it really depends on the patient. So for some patients, they may pay attention to the CRP or the sed rate because there tends to be more indicative of how that patient is doing.

Other doctors might say, "It's not the main thing that's important when we're understanding this patient's disease activity." So I think part of what is a little bit tricky about this is that it really is so individual-based on particular patients. But I think by and large, patients really did understand that their doctors are ordering lab tests because they want to make sure that there's not side effects happening from the medications. And they also are using that data as part of their assessment to check for active inflammation and disease activity.

RALN:

Now, is there a degree of self-selection here? Because this is coming from the ArthritisPower registry. So you've got patients here who are already, let's say, perhaps more informed, more actively monitoring themselves, not just doing what the doctor says and going on about their business, but they're really engaged in their own care. How does that affect the way you look at these results?

Ben Nowell:

I think it may be true that the population or this particular survey sample was looking at patients who may be more engaged. I think what's more important to note is that if we've had a sample of patients who were very new to RA, so newly diagnosed or mostly biologic naive, for example, we might have a little bit different results. Because in our sample, almost all of the patients, at least more than three-quarters of the patients, had been living with an RA diagnosis for 3 or more years. So these are people who mostly have longstanding RA.

So I think what would be interesting in a follow-up study is to really understand how people who are just getting a diagnosis with RA, trying to wrap their head around all of it, how they would understand or think about the blood work and lab tests, what questions they would have, and also how they would feel about a potential test that would predict treatment response. Because they're pretty early in their journey, they may not have moved from a conventional synthetic DMARD onto more advanced therapy, and maybe that's a point at which this would be an important test for them in particular. So I think that would be a pretty interesting follow-up study is to really restrict the cohort to just patients who are newly diagnosed.

RALN:

What is the value of understanding these results for the practicing rheumatologist? How can they apply this in their practice?

Ben Nowell:

I think helping patients understand what's important about blood work, what the limitations of blood work are, that it is not going to tell you everything, but that it's useful as part of the picture of understanding disease and disease activity and even the potential to make treatment changes using blood work more probably in the future as we have tests that are available to help predict treatment response. So I think those things are important.

And just a reminder, I think rheumatologists are wonderful at communicating with patients overall. And I think just bearing in mind that patients do have curiosity about their blood work and being able to understand what's important about it and what they need to hang onto in terms of remembering or paying attention themselves as patients, I think would be helpful and potentially make them more engaged in their care and their treatment.

RALN:

Any other advice for the practicing rheumatologist in communicating about this with patients? Anything else you'd like to add?

Ben Nowell:

Yeah, there are great resources available online. My organization, CreakyJoints, has a patient's guide to rheumatoid arthritis blood work or laboratory tests that is a really useful resource. I know also for for patients who are overseas in the UK, the National Rheumatoid Arthritis Society, I believe is the name of the organization over there, they also have a pamphlet called Blood Matters, which also breaks down in less detail, but it also does talk about blood work. So I think there's good resources that have already been created that rheumatologists can pull from or make available or direct their patients to look at if they want to share more information from things that have already been created.

RALN:

Well, we appreciate you taking the time to talk with us about this today and look forward to hearing about future research that you do along these lines.