Patient Attitudes to Online Wellness Programs for Psoriatic Arthritis

https://creakyjoints.org/psawellness/

TRANSCRIPT:

Welcome to this podcast from the Rheumatology & Arthritis Learning Network. I'm your moderator, Rebecca Mashaw. Today, we're with Dr. Shilpa Venkatachalam from the Global Healthy Living Foundation to talk about some research that she and colleagues conducted into patient views and attitudes about managing psoriatic arthritis, using a guided online wellness program to address lifestyle behaviors such as nutrition, exercise, sleep, and stress management. Thank you for taking the time to talk with us about this topic.

Dr. Shilpa Venkatachalam:

Thank you for having me.

RALN:

To begin with, tell us why you chose to research this particular issue.

Dr. Shilpa Venkatachalam:

Sure. So we know that people living with psoriatic arthritis and other forms of inflammatory arthritis regularly confront decisions about how to optimize treatment for their chronic disease. While their interactions with their physicians and their health care team impact their disease outcomes through the prescription of medications and other complimentary therapies, we know through more and more research that lifestyle modifications can positively affect disease outcomes. So for example, patients who tailor their diet and nutrition, incorporate exercise and movement — which is sometimes very difficult for people living with chronic pain— and also incorporate lifestyle changes such as smoking cessation, these are things that can really impact their disease outcomes and how they experience their disease. Practicing mindfulness, for example, something that's been gaining a lot of momentum, especially to manage pain, and developing good sleep hygiene. Again, a very problematic aspect for people living with chronic conditions and chronic pain in particular.

It's a huge problem, right? And so we know that modifications and incorporations through these different modalities can really, really improve outcomes for patients. In addition, we know that many patients are very interested in understanding additional treatment modalities to manage their overall health and disease. So we're not saying these need to be substituted for medications, but these need to be added and incorporated with medications to create a more holistic treatment regimen. And so this is why we wanted to do research, and we are doing more and more research on this topic. Because we as an organization, the Global Healthy Living Foundation, our mission is really to provide evidence-based information to patients for their own self-management, so that they can make more informed medical decisions.

RALN:

You mentioned outcomes. What specific outcomes did you look at in the conduct of this study?

Dr. Shilpa Venkatachalam:

Let me give you a little bit of context here to the study itself. So we worked in collaboration with clinicians from the Cleveland Clinic, Dr. Elaine Husni and Dr. Len Calabrese. And we also worked with patients on this study that was titled “Managing Psoriatic Arthritis Patients' Views and Attitudes to Using an Online Wellness Program.” This was a cross-sectional online survey that was developed with patient and clinician input. All the work we do at the organization involves input from patients, because it's patient-centered research. And it was administered to US adults with a psoriatic diagnosis within the ArthritisPower Research Registry.

Survey questions were around participant experience with, and motivations to participate in, an online wellness program. So we surveyed about 312 patients, and 106 people completed the survey; 83% were female, so it was overwhelmingly female response, and about 91% were white, with a mean age of 57. These were people who had psoriatic arthritis for 10 or more years. I'll also add that this coincides with the national data, in the sense that people diagnosed with inflammatory arthritis tend to be white, middle-aged women. And there are several reasons for that, there's also the aspect of under-diagnosis in other communities that we haven't talked about. But that's a really important thing to keep in mind as well.

RALN:

These outcomes that you were looking at, you said participating in these wellness programs can improve outcomes. Are we talking about pain management?

Dr. Shilpa Venkatachalam:

Absolutely. So for this particular study, this was a prestudy to the outcomes. We haven't measured outcomes for this particular study. What we're assessing in this study is how interested are patients living with these conditions in engaging with an online wellness program, and why? And what are some of the barriers, and then what can we do about those barriers? The first step is always to learn and gain insight on why patients are interested, if patients are interested, and if they're not interested, what are some of the barriers, right?

What we learned was that more than 90% of the participants reported that they would be very likely to engage with an online coach. This indicated to us that in their survey that they were somewhat likely or very likely to interact at least twice a week or dedicate even 1 to 2 hours per week to learning more about nutrition, exercise, sleep, and stress management. Feeling better was the top motivator for participating in a wellness program. This is really important. So this means that patients are interested in incorporating other modalities of treatment alongside their medications. And this was followed by a desire to improve their symptoms.

Again, we now know that patients realize that there is more than medications that can help them to feel better. And our aim, again, as a research community and the clinicians we work with, is to help patients to feel the optimal level of wellness that they can feel, so they can live a good quality of life. Now, we also wanted to understand what some of the top barriers were, and we saw that nearly half reported that cost, and not having the energy to make changes, were the top barriers to wellness changes. Again, very important, because often insurance plans don't cover wellness related modalities that can be incorporated in a treatment regimen. We also learned that a third of patients prefer to participate in a wellness program with an online coach, so indicating some guidance, handholding.

And I'll say that we weren't entirely surprised by the results of this study, regarding how important wellness was to our patient community. We've heard this on various other research projects. We've heard this anecdotally, as we engage very closely with our patient community. Now, regarding how the wellness programs themselves were set up, about a third of patients expressed a preference for direct online interaction with a trained professional, followed by attending an online course, and reading written materials, suggesting, again, that patients want to follow a structured, and perhaps an evidence-based program, that they know can have an impact on their disease. So I hope that helps to give you an overview of what we aimed to study and what we learned through the study.

RALN:

Absolutely. Speaking to cost and energy as barriers, are there online resources that rheumatologists could direct their patients to that are either low-cost or free, that would help them participate in wellness activities?

Dr. Shilpa Venkatachalam:

Yeah, so that's a really good question. And at the foundation, at the Global Healthy Living Foundation, our commitment is always to provide patients with resources and evidence-based information. There's no use telling patients that good sleep hygiene and diet/nutrition modifications can help, but then not give them the tools to really incorporate that into their treatment regimen. And so at the foundation itself, we have several resources that can help patients interested in wellness, including a newsletter. It's called the Psoriatic Arthritis Wellness, a newsletter series to help you feel better with PSA. And then we have a Psoriatic Arthritis Wellness Center, which is online that we've developed, and that we created in collaboration with United Rheumatology. So these are resources that we create in collaboration with clinicians, researchers, again, all evidence-based. We know unfortunately, as the health care landscape is set up right now, that wellness programs can be costly, and are often not covered by insurance. And so we're constantly working to add more resources to already existing ones, so that our community can avail of them.

RALN:

In terms of energy, that's very connected with fatigue, including in psoriatic arthritis. What can rheumatologists do to help their patients deal with fatigue, whether it's counseling, or referral to other professionals? What would you advise?

Dr. Shilpa Venkatachalam:

Again, this is a very, very important question. We've learned from patients that fatigue is one of the most bothersome symptoms, and unfortunately, you can't see fatigue on a blood test. You can't see it in imaging. Your X-rays are not going to tell you that this patient is fatigued to an X level. And so what we encourage our patient community and also researchers and clinicians we work with, we encourage them to use our app, Arthritis Power. And through that app there is the ability, and it's set up so that patients can complete what are called patient-reported outcome assessments. Patient-reported outcome assessments are basically validated measures that were developed by the NIH, the National Institutes of Health. And what they do is they are a means of relaying information directly from the patient to their clinician. And so there are health assessments around, for example, fatigue, pain, physical function, and so on and so forth.

And so if patients are able to document their fatigue, these are symptoms that ebb and flow in a condition like psoriatic arthritis. So if they're able to keep a diary, so to speak, or a trail of how their fatigue has been over the past few weeks longitudinally, and then share that with their clinicians, it may help their clinicians to understand how bothersome this particular symptom is. And clinicians we work with are very supportive about using patient-reported outcome measures, combining that with other biomarkers that they get through blood tests, and through their labs. Our goal really is to reach a point where we are able to combine different sets of data, including patient-reported outcomes, where patients are able to talk about their fatigue in a validated, standardized manner, combine that with what we see in the biomarkers, what clinicians see on their biomarkers, and thereby develop a more holistic treatment, disease management plan.

RALN:

Well, this is all very interesting. Now, do you have any suggestions for the practicing rheumatologist about where to get more information about what they need to do in the conduct of their maybe 15-, 20-minute clinic visit? Which of course, there are a lot of constraints around.

Dr. Shilpa Venkatachalam:

Absolutely. So as you said, it's a 15-minute visit, and we encourage patients to make the maximum of those 15 minutes. You want to communicate what is really important in those 15 minutes so that you can make the best decision possible together. We work with clinicians throughout the, I guess, the organizational journey, and we're very lucky to work with clinicians who are very patient-centered, and focused on evidence-based patient care. Our recommendation always is, both to patients and to clinicians, and to researchers, is to allow for a combination of data and information gathering, like I said before, through biomarkers, your blood tests, your imaging, but also to listen to the patient.

And one of the best ways to listen to your patient is through attention to patient-reported outcomes. This is our constant commitment, is to bring these 2 pieces of information together. The other thing I would say is patients are really interested to talk to their clinicians about these wellness-based activities. And there's not always a lot of time, right, in those 15 minutes. And hence, we, as a patient or advocacy organization, want to help and support clinicians as much as we want to help and support patients. And so we have these resources, and perhaps what clinicians can do is direct patients to these resources that can provide them with the tools that are necessary for patients to incorporate them into their own treatment plan.

RALN:

Thank you very much for your time today. This is very interesting. I'm sure you're going to continue to research this topic. We'll be interested in speaking with you again.

Dr. Shilpa Venkatachalam:

We absolutely will. And thank you so much for taking the time to speak with us on this very important topic, both to clinicians and patients alike.

RALN:

It's my pleasure.