Shanthini Kasturi, MD, MS, on Perspectives on Patient-Reported Outcomes in SLE

In this podcast, Dr Kasturi discusses recent research on the benefits to patients with systemic lupus erythematosus (SLE) of including patient-reported outcome measures into their clinical care, and how to overcome barriers to implementation.

Shanthini Kasturi, MD, MS, is an attending rheumatologist at Tufts Medical Center, assistant professor of medicine at Tufts University School of Medicine, and a medical advisor to CreakyJoints.

TRANSCRIPT:

Welcome to this podcast from the Rheumatology and Arthritis Learning Network. I'm your moderator, Rebecca Mashaw. I'm happy to welcome Dr. Shanthini Kasturi, assistant professor of medicine with Tufts University School of Medicine, to talk about a new study of patient reported outcome measures among patients with systemic lupus erythematosus and how they can benefit patient care. Thank you for joining us, Dr. Kasturi.

Dr Kasturi:  Thank you for having me, Rebecca. It's pleasure to be here.

RALN: What can you tell us about what led you to create this study of patient reported outcome measures in lupus and how they can be incorporated into clinical care?

Dr Kasturi:  As a Fellow, I was really drawn to the concept of patient-centered care and what we mean by that, and patient-reported outcomes are one way to capture the patient's perspective and move towards patient centered care. And so I started by looking at how we measure these outcomes and did some psychometrics work around patient reported outcome measures—things like function, quality of life, patient experience, some of those domains are what we consider patient reported outcomes, essentially anything that the patient tells us directly without interpretation by anyone else.

So in doing this more technical work, I took the measures to patients and got their feedback on what was important to them and how they might want to use these survey tools as part of their care and their day-to-day, because I was surprised to learn that most of these metrics are used in research, but they don't have much of a role in day-to-day care. In asking the patients these questions as part of focus groups, I learned that the patients actually found the surveys very useful for their own purposes. It was a reflective process for them to complete the questions, and they really wanted to do this as part of their day-to-day care, not just part of research studies.

And so to me, that seemed like a great opportunity to see how can we do this? Is this something that we can incorporate as part of routine care for lupus patients to give patients what they want in terms of a mechanism to highlight their perspective and bring what they find matters to the table when they're seeing their doctor. So that's how this study came to be.

RALN:         Can you give us a brief overview of the study?

Dr Kasturi:  This was a pro spective longitudinal study. We put together a cohort of patients from 2 academic medical centers, and our goal was really to figure out whether it's feasible and what the impact of implementing patient-reported outcome measures in clinical care would be for this population of lupus patients. The idea was essentially to have patients complete these surveys as part of their routine care. So they would complete quality of life surveys before their visits with their rheumatologists and they would have the opportunity to look at the scores. The rheumatologists would get the score reports and they could talk about it. They could not talk about it. We left it open to the patients and providers to decide what they want to do. So a very pragmatic design in that, and this was observational.

And we evaluated the impact of doing this in a couple different ways. We had surveys that essentially asked the patients and doctors to tell us, did you talk about these things? What impact did it have on care? We measured patient activation and patient satisfaction with their clinical care after these surveys were implemented. And then we also did focus groups and interviews at the end of the study to really get more nuanced feedback on how this all went.

So that was the design. It was a mixed method study, observational study. In terms of how it ended up panning out, we enrolled 105 patients at the 2 sites and they had 17 different rheumatologists, so we really had a diversity of patients and doctors. We followed them for 2 routine visits. The study did get disrupted by the pandemic, so we had to terminate a little bit early, but we were able to get some good follow-up data.

In terms of major key findings from the study, we found that it was feasible to implement these surveys as part of care. And what I mean by that is 85% of the time the patients completed these surveys before their visits, and there was no impact on visit length. The time that was spent in the visits before and after implementation of the surveys, that had been a major concern of rheumatologists when we evaluated barriers and challenges beforehand.

So it was feasible to do this and it was beneficial, that was really the major takeaway. Patients found this overwhelmingly to be a positive experience to be able to do these surveys before their visits. Even though it took some time, they felt that it was helpful in many different ways. So more than 50% really felt that way and we can talk more about what they said in a minute. Interestingly doctors were not as overwhelmingly positive about it. They liked it or they were neutral, but only about 20% of the doctors felt like this was really useful and really helped them communicate. So that was interesting, because there was a disconnect between the patients and the doctors in terms of their experience.

RALN: Did you find something to attribute that difference in perspective? Did anything come out of your study that clarified why only 20% of the doctors were really on board?

Dr Kasturi:  It was more like 50% of the visits patients found it really useful and it was 20% of the visits that doctors found it useful. And I think the reasons just have to do with the perspectives that patients and doctors come to visits with.

Patients found it useful because they felt, this is my perspective and these surveys are letting me bring my perspective to my visits, so that was important. They felt that it helped them communicate. They felt, if I do this stuff beforehand, I'm prepared. I know what to talk to my doctor about, so that helps me. And if my doctor's asking me this question, they must care. They really care about me. So it bolstered the therapeutic relationship from the perspective of the patients. And then another interesting point that patients brought up was that just the process of doing the surveys, just answering those questions and thinking about it was a validating experience, and it was a reflective process that gave them value whether or not the doctors actually talked about it at the end of the day. So they gained value in all those different ways.

Doctors, on the other hand, when they think about visits, I think oftentimes we're thinking about what information can I get that's going to help me manage the situation, take care of the lupus, manage the disease? What's going to affect my treatment plan? And the patient-reported outcome measures, a lot of times the doctors did not feel they were giving them new information. They felt they were getting this information already in the other ways that they get their history and ask their questions. So they were approaching it a little bit differently. They've been trained in how to take a history, how to build that rapport, and these outcome measures weren't necessarily adding to it from their perspective. But patients felt differently, and so I think that was really interesting to see that disconnect.

RALN: It sounds like patients felt like they had a voice. This process of filling out these outcome measures, they were able to express what they really wanted to say.

Dr Kasturi:  Yes, I think that's a great way of putting it. I think the surveys give them a voice and it engages the patients. It makes them an active participant in things and it tells them they matter. And when we looked at patient activation, we didn't have large numbers in the study, but we did get a signal that there were some patients who became more activated over the course of the study. They were more engaged in their care, perhaps because they were completing these surveys.

We also looked at patient satisfaction, a simple metric, how likely are you to recommend this provider? And it was high to begin with. These patients were very satisfied with their doctors even before we started this study. But even that metric went up a little bit over the course of the study. So nothing statistically significant in these small numbers, but something to think about when you think about this on a population level.

RALN: It was interesting that some of the physicians did find that the results of the patient-reported outcome measures opened up topics for discussion with patients, possibly on things that wouldn't necessarily come up ordinarily, like sleep and fatigue. But these are interestingly becoming more and more prominent as major issues for patients with rheumatic diseases. What did you think was the most important role of this patient reported outcome measure in terms of the physician/patient relationship?

Dr Kasturi: Yeah, so I think there are a number of different things. I think there are many topics that patients don't feel comfortable bringing up on their own and fatigue might be one of them. They don't want to necessarily seem weak like, "Oh, I'm strong. I can handle it. I'm not a wimp." They may not think their doctors care about how much they're sleeping. They don't think that's something they need to bring up in this setting.

And then a big one is mental health. So that was a topic that came up and got a lot of attention through these surveys that doctors noted, "Hey, I had no idea this person was feeling this anxious about this, and I didn't know that was impacting how they looked at their lupus, and how they looked at their medications and their treatment plan overall."

So I think patient-reported outcome measures can draw attention to those issues and can lower the barrier to talking about some of these things that are so important to patients and are so important to just the general treatment plan. If you don't know that someone's anxious or depressed, then you don't know that that's going to impact whether or not they take their medications and everything else that's going on. And if you don't know that they're fatigued, then you may not have a good sense of how well your medications are actually working to manage the situation and improve the functional status of the patient you're taking care of. So I think these metrics help with that.

And then I think the other way they help with the doctor/patient relationship is something that I alluded to earlier, which is just the signaling to patients that my doctor's asking about these things that are important to me, so they must really care. And they're taking the time to look at my answers and that's important. So I think that bolsters the relationship and the trust, even if the measures aren't actually discussed directly.

RALN: So is there anything further that you would like to add in terms of advice to your colleagues in rheumatology as they consider whether to implement these patient reported outcome measures in their practice?

Dr Kasturi:  I think doing this study, I learned that there's a lot of value that we may not necessarily see as physicians. And there are some barriers. Certainly you have to have the infrastructure to do this. And there are many ways to do that now, whether that's through EPIC. We use the Arthritis Power Registry app for the study. There are many ways to do it. So it's possible to do it, so I will say that. It doesn't impact the length of time. None of the visits got longer, really, as a result of this intervention from what we could see.

And then the biggest take home is that patients want to do this. And if we really think of ourselves as providing patient-centered care, then we ought to consider including this as part of the equation and realizing that the benefit may not be in traditional ways we think of in terms of new information or a direct impact on care. But the benefit may be in these softer things that are harder to measure, the relationship that you have with the patient. And I will say that the doctors in the study, these were not new doctors out of fellowship exclusively. There were some, but many of these doctors had been in practice for 10, 20-plus years. And even many of them found benefit to the relationship from this, and recognizing that we may not see it, but the patients are getting something out of it just by doing this. But just by thinking about the questions and answering it, it's a reflective journey for them in thinking about their disease. So yeah, I would really urge people to think about these different cases for value for these surveys and in clinical care, not just in research settings.

RALN:  Well, thank you very much for your time today. This is very interesting and I think that our rheumatologists are going to find it very useful in their practice.

Dr Kasturi:  Well, thank you so much, Rebecca. Thanks for having me.

Reference:
Kasturi S, Price LL, LeClair A, et al. Clinical integration of patient-reported outcome measures to enhance the care of patients with SLE: a multi-centre prospective cohort study. Rheumatology, 2022; DOI:10.1093/rheumatology/keac200