W. Benjamin Nowell, PhD, on PROs Using the ArthritisPower App


In this podcast, W. Benjamin Nowell, PhD, discusses the newly published study,“Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower.”

W. Benjamin Nowell, PhD, is the director of Patient-Centered Research at CreakyJoints and principal investigator at ArthritisPower.



Rebecca Mashaw: Welcome to another podcast from Rheumatology Consultant. I'm your moderator, Rebecca Mashaw. Today, we're joined by Dr Ben Nowell, who will discuss some very interesting research he's been conducting into patient reported outcomes, and how patients select the outcomes they want to track via a smartphone app.

Dr Nowell: Hi, I'm Ben Nowell. I am the director of patient centered research at the Global Healthy Living Foundation. I'm also the principal investigator for the ArthritisPower patient registry.

RM: Thank you for joining us today. We appreciate your time.

Dr Nowell: My pleasure.

RM: We wanted to talk to you about a recent publication in which you were taking a look at patient outcome measures and which ones patients chose to track through the ArthritisPower smartphone app. Why did you decide to assess these measures and find out which ones that the patients gave priority to? What does that information tell you that you need to know?

Dr Nowell: That's a great question. Patient reported outcome measures are a fantastic tool that is information provided directly from patients about how they're feeling. The bank of patient reported outcome measures, or PROs, that we chose to mostly draw from is the PROMIS measures, that library that was developed by the NIH. What's useful about that particular library of measures is that it's not specific to any particular disease, it can be used across all conditions, but they have it broken down into different domains. Social health, mental health, and physical health, and then you have some global measures of as well. What we wanted to understand was, within each of those areas, what were the particular symptoms that patients felt were most important to track? Within physical health, for example, we were able to pull out measures like pain, physical function, and so on, to get a better understanding of, from the list that we provided for patients to select from, which ones they would prioritize to choose to track, and especially to track over time. Which ones were the most sticky or meaningful to them, not just at a one off choice today, but after they've been tracking for a month, or 2 months, and 3 months—this was a 3-month study—what do they continue to choose to track? It's not just asking them for their opinions about what's important, but what do they actually demonstrate to us by their behavior is important to track because they are tracking it across those a number of months.

This is especially important, as I mentioned, because it's a pretty powerful way that patients can communicate how they're feeling. Because our ArthritisPower registry was set up with these principles of patient centered outcomes research, this is especially important for us because the tenets of patient centered outcomes research to convey the idea that we want to conduct research that is meaningful and relevant to patients. What does that mean? It basically means that we're providing information or generating new evidence, new information, that we can provide back to patients that's going to help them make health care decisions. Whatever the findings are from research, we can then share that to patients in a way that's understandable so that they can ultimately better manage their disease, achieve their health goals, because they'll use that information in their health decisions.

RM: Your study noted that about 83% of your participants had selected pain as a key symptom to track. That measure was then divided into pain intensity and pain interference. How do you define interference for this purpose? Did you see a marked difference between these 2 measures in terms of how often they were chosen?

Dr Nowell: Within the PROMIS measures, there's 3 different measures for pain. One is pain behavior, one is pain interference, and one is pain intensity. We chose 2 of those. Pain behavior is important as well and actually, I guess for our purposes, the measure we usually default to is pain interference. Pain intensity just measures exactly what it sounds like. It measures how intense someone's pain has been over the past 7 days and then how intense it is right now. Then pain interference, in some ways, we think of it as a more objective or more true measure of pain because it's about how much pain interferes with someone's daily activities. The questions on that pain interference measure are about, in the past 7 days, how much has pain interfered with work, around the house, with social activities, with enjoyment of life, and that sort of thing?

RM: The single most often-selected measure across all participants turned out to be fatigue. Was that a surprise?

Dr Nowell: It was, in some ways, expected. There's been other work done prior to this by the OMERACT group that found, for example, that patients do prioritize fatigue as an important symptom for their rheumatic and musculoskeletal disease. The research that was done specifically in rheumatoid arthritis, fatigue is an important measure from the patient perspective, but it's not always asked about or thought about on the physician side. It was not such a surprise to see fatigue rise to the top of the list of what symptoms patients prioritized here in this study. What's important is that it confirms, reiterates, what's been observed in other studies as well—that fatigue's an important symptom that's not necessarily being addressed adequately. If patients are still talking about it, it's something that, from the patient perspective, that's why it's important to do this kind of research. It's something that we need to take into consideration and figure out, what are the best interventions? What information can we give to patients to help them manage fatigue, deal with fatigue, reduce their fatigue, and so on? Either behaviorally, or pharmaceutically, are there things that they can do that will help? It's part of the bigger picture of just getting a handle on disease activity for patients.

RM: One thing that was interesting was that these participants were from across several different disease states. From ankylosing spondylitis, osteoporosis, rheumatoid arthritis, a variety of RMDs. Yet fatigue was, again, a common measure that they chose. Did you gain any insight into why patients from all of these groups tend to suffer from this fatigue? Why it's a continuing problem? Or is that something that needs more research?

Dr Nowell: As you point out there, we did include a lot of different conditions in this study. Although the overall sample wasn't big enough, or at least our subgroup analysis, the sizes weren't big enough to draw strong inferences from the findings there, we did find that there was a difference. Like, when we compare patients with rheumatoid arthritis (RA) versus patients with osteoarthritis (OA), we did find that the PROMIS fatigue, the fatigue measure, had a higher mean ranked score among the RA participants than the OA participants. In the final analysis, when they chose what was most important, so after they tracked for a number of months, and then, at the end, we asked which measures were most important to them to get it listed prioritized symptoms, fatigue popped closer to the top. It got a score of 50 among RA participants versus 21 for OA participants. That was a difference that was significant in this pairwise comparison that we did and that subanalysis. Although fatigue is important across the conditions that we looked at, it sounds like for an inflammatory arthritis and autoimmune condition like rheumatoid arthritis, it's even more important and it's more of a priority. That's probably not that surprising. Autoimmune conditions have a big impact on people's lives and people's bodies. Fatigue is an area that really stands out, especially.

RM: You also noted that more than 82% of participants selected one of the PROMIS mental health domain instruments. What can you tell us about these instruments, what they measure and what you found?

Dr Nowell: That's an important finding to note as well because we think of rheumatologists as having some excellent tools in their armamentarium of what they can do to treat patients. Mental health, unfortunately, is often overlooked. There's other professions, social work, psychology, and so on, that are more tuned in often to try and understand what's going on from a mental health perspective and also proposing interventions and treatments. But we have heard through this study that mental health is a prioritized concern of a lot of patients with these conditions. So we had at least 4 mental health measures that were included in our study that patients could select from. Overall, completion of any of those mental health instruments was in the 80% range of what people chose. That was across 4 four measures, PROMIS depression, PROMIS anxiety, PROMIS anger, and then also PROMIS applied cognition abilities, which a lot of patients think of a measure of “brain fog”. Of those, that depression measure was the one that was selected most often. This measure of emotional distress is important also to pay attention to. That these are things that affect a lot of patients and may not always be taken into consideration in their care or treatment and that obviously is a big part of what they're experiencing in their own lives.

RM: Based on what you've learned through this study, what are the next steps? What topics do you see that you think need more research in terms of patient reported outcomes or that point to gaps in care that can affect patient quality of life and the effectiveness of treatment?

Dr Nowell: From a research perspective, what these findings can do for us are basically to help us make sure that we're incorporating the PROs that really matter to patients into the studies that we're doing so as more and more studies are using these patient generated data for patient reported outcome measures. We can make sure we always are including a measure of pain, a measure of fatigue, some measure of emotional distress or mental health into those studies. Physical function, of course, duration of morning joint stiffness, those were the big ones from our study. That's great, helpful, important information for us to prioritize those as we move forward. We also are doing some research that we have ongoing and cued up to start, where we're comparing data from wearables, like a smartwatch or some kind of a wearable device that would measure things like daily step count, hours or minutes of sleep, and so on, to see what associations there are between PROs, like pain and physical function, with those kinds of what they call passive measures. The other insight here is iterated before. It's very important that we consider things like fatigue and emotional distress in the overall care of our patients and find ways to address those issues with them. Even by talking about them. It's an important first step clinical care to check in with patients and propose some potential solutions or interventions that can help address those things.

RM: Of course, for the clinician, frequently, time is an issue. Are there instruments that practicing rheumatologists can use, that they can fit into a 15 minute office visit, that will help them get a better sense of how their patients are doing in terms of pain, and fatigue, and depression, and some of the other functional measures that you mentioned?

Dr Nowell: Absolutely. A couple of thoughts I have about that. I'm very sensitive to the fact that there's a lot of time pressure for practitioners when they're speaking with their patients. There are a couple of suggestions. One is that there's great information that's patient friendly, patient facing, that's available. The organization I work for, Global Healthy Living Foundation, and our CreakyJoints website and patient community, both just the website itself, or, but also the social media platforms on Twitter, Facebook, and even Instagram, have some excellent articles that can help patients feel like they're not the only ones experiencing these kinds of symptoms or barriers, and also offers some great advice. Spending a few minutes, even if it's the office manager, a nurse, or the rheumatologist spending a few minutes on the CreakyJoints website and being familiar with the resources that are there and then providing some of those suggested links or articles to patients could go a long way in connecting them with those resources. Then the other thing is that as we move more and more—as we've seen in the past year with the pandemic—we are moving more and more into telehealth, there are ways that we can learn how patients are doing even when we don't see them in person. For example, with ArthritisPower, the registry, there's an associated smartphone app that helps people track their symptoms, including all of these measures that we talked about in the study. There are some initiatives we have connecting the clinical electronic health records with the PRO data so that so the doctors can pull up and see how patients are doing in between visits and quickly get a read on what's going on. In some ways, it's a much more efficient way to learn that a patient's experiencing a lot of fatigue, or sleep disturbance, or emotional distress, or some of these things that we found were important for patients here even before the patient starts talking. A doctor might already get a read on what the patient has been going through over the past few months. Those are a couple of suggestions we have, of course, that's from the situation where I sit in research in a patient organization. I put a lot of faith and trust in wonderful rheumatologists that are out there every day seeing patients in this country, but those are some resources that are available that we would encourage people to tap into.

RM: Thank you so much for sharing some insights with us today and talking about your research. We're going to look forward to hearing about the research that you have ongoing in the future.

Dr Nowell: Thank you very much. It's been a pleasure. I appreciate the interest in this study.