Benjamin Nowell, PhD: Mindfulness Program for Patients With Rheumatic Disease

Rheumatology Network sat down for an interview with Benjamin Nowell, PhD, in partnership with CreakyJoints, to discuss his study entitled, “A Mindfulness Program Dosing Study to Evaluate Improvement in Emotional Distress Among People With Rheumatic Disease,” which was presented at the EULAR 2021 Virtual Congress. Nowell is the Director of Patient-Centered Research at CreakyJoints, part of the Global Healthy Living Foundation. He explains the Healthy Mind Healthy You study, which assessed 2 mindfulness programs of varying lengths and compared the results. We also talk about how mindfulness can improve emotional distress in this patient population and why he believes these patients may require additional support to remain engaged throughout a mindfulness program.

Rheumatology Network: Hi, Dr Nowell. Thanks for joining me today.

Benjamin Nowell, PhD: It's a pleasure to be here. Thanks to Rheumatology Network for the invitation to talk about this study.

RN: Absolutely. What first interested you in researching mindfulness programs in this specific patient population?

BN: Well, personally, mindfulness meditation is something that I've been aware of for a long time. I used to live in San Francisco and used to attend classes there. And then, as I was finishing my social work program, I also took a weekend intensive mindfulness meditation course. And so, for my own personal uses, I've been very interested in mindfulness as a way of dealing with anxiety and living more in the present moment. And there's some evidence from other studies that mindfulness really can be really helpful to improve wellbeing among patients with other conditions. But 1 thing that we wanted to look at in particular in this study was the impact for people living with rheumatic diseases. And the focus of our study in this case, was really to be able to compare 2 different lengths of mindfulness meditation training, because it's a reasonable hypothesis that the more training you get, like an 8-week versus a 3-week training, it's reasonable to assume that you might get more of a benefit from doing a longer training. So, in our study, we wanted to examine that question,

RN: Why have programs increased in popularity for patients with rheumatic disease?

BN: Well, I think in general, as we live in an increasingly distracting world with our devices, with the pings and getting notifications from our email, from texts, from social media, things move very fast. And there's evidence from prior studies that mindfulness meditation is an effective way to allow us to just take time out, be present in in the moment that we're in right now, and to develop this sort of intense awareness and focus on the present moment without judgment. And especially for people with living with rheumatic disease, it can be an important way to help take notice of things that we might be feeling so anxiety, pain, you know, bad feelings, and to be able to better cope with them. So, I think that for the purposes of this study, that was one of the things that was important to us, to examine why that's so important for people living with rheumatic disease. And to see if people can get a benefit from a shorter programmer, can you to do more to derive more benefit?

RN: Can you tell me a bit of background on the Healthy Mind Healthy You study and the 2 programs (both full length and brief) that were compared?

BN: Absolutely. I should say to that for people living with inflammatory joint conditions, that there's evidence that mindfulness can be useful in complementing existing treatments. So not as a replacement for but to augment the existing therapies that they're working with their rheumatologist on because there's evidence that it can help with psychological distress, to help with self-efficacy, pain and pain symptoms, to help with emotional processing, even to help with fatigue and an overall wellbeing. So, in this study, we were part of a larger study that was funded by the Patient Centered Outcomes Research Institute (PCORI). So, this was adult US participants who are part of the Arthritis Power registry, which is what we lead here at Global Healthy Living Foundation. But there were a number of other patient-powered research networks, for other conditions, for cancer, for cardiovascular health, and so on, that were also part of this study. And the idea was to compare the effectiveness of these 2 online mindfulness training programs. And the name of this bigger initiative was called Healthy Mind Healthy You (the bigger, PCORI funded study). So, what we did was we compared this mindfulness-based cognitive therapy session, or MBCT. That is an 8-week program with 1 30 to 45 minutes session per week. And then compare that against a 3-week program of also 1 30 to 45 minutes session per week. And the programs are actually quite similar. They cover a lot of the same topics, they both define what mindfulness is, some address some common myths about mindfulness. People engage in body breath, exercise, getting practices and familiarity with that, understanding how to use the body breath in daily life. So, going a little deeper into that is something that they would cover on the 8-week course, but not in the 3-week course. And so, there's some good overlap of the main topics covered in the 2 programs. But for the longer course, there's some repetition and going a little bit deeper in some of the topics.

RN: And what were the results of this study?

BN: So what we did was, over the course of the programs themselves, the 3-week or the 8-week, and then the follow up weeks that followed, we collected a number of outcome measures. The 4 that we looked at in this study were the World Health Organization 5 wellbeing index, or the HU 5, something called the perceived stress scale, or PSS, and then to PROMIS, patient reported outcome measures, the short form for anxiety and the short form for depression. And what we found is that when we looked at the comparison between our 2 groups that baseline, the demographic characteristics of the participants in the 3-week versus the 8-week, where there was no significant difference between those 2. And also, their outcome scores at baseline were similar. So, the randomization seemed to have worked, which is great. Then when we looked at 8 weeks out, so a few weeks after the 3-week course finished, and then right at the end of the 8-week course, that there wasn't no significant difference between outcome measures between the 2 different lengths of the course, which in some ways, is great. So, it's the hypothesis that a longer course might provide more benefit didn't seem to hold water. So, it looks like people can actually get a benefit from even a 3-week abbreviated or brief course for mindfulness. The other thing that we found that really interesting is that, in particular, the PROMIS anxiety scores improved by 3, which is enough to be a minimally important difference. So, it's a meaningful change in anxiety scores. So, this study lends some additional credence to the idea that even brief meditation training can be helpful for people living with rheumatic disease that it actually, in particular for anxiety, wellbeing makes a difference and helps people feel a little bit better.

RN: Were you and your team surprised by the results?

BN: I think it was somewhat surprising to find that there was no significant difference between the longer course and the shorter course. And I think that's frankly, good news. Because sometimes it's a big commitment for any of us to take on an 8-week course and just stick with that. One thing that is important about mindfulness is that it's a practice. It's an ongoing practice. But people can learn how to do it in a in a relatively short amount of time. So, it's a practice that can be easily picked up once you know the basics. So, I think it's not necessarily surprising. But it's great news. I think it's good confirmation that we can you can get some benefit out of a shorter course versus a longer course. I think what also may not be surprising, but it's just good news in general, is that this stuff works. You know, there's prior research that indicates that mindfulness meditation is effective at improving wellbeing, decreasing anxiety, and just general coping. And so, I think this, this study supports those prior studies as well. And specifically, with a group of people who are living with different rheumatic diseases.

RN: Why do you believe that these patients seem to require additional support to remain engaged throughout the program?

BN: Yeah, so we had a lot of attrition in the study. So, for example, of the 324 participants who completed assessments at baseline, who basically joined the study at the beginning, only 70 patients, 35 in each of the arms, completed the assessments at week 8. So that's more than a 70% attrition rate. It's like 3/4 of our participants are dropping for this particular study. So that leads us to believe that we really think people need a little more support for an online course like this. Some of the things that I would recommend we provide in a future study like this, or for other folks that are doing similar studies, is to do a bit more in terms of following up with patients. There were automated emails and reminders that went out to them, but there was not additional support, like technical support. And since all of these trainings, all of the sessions were online, or web-based, if someone wasn't as familiar with that, that platform or using that kind of modality, they may get frustrated, they may drop out at that point. The other thing that we found in other studies as well is it can be really helpful to have a case manager, a study coordinator, someone who follows up with text messages with a phone call, or a personal email that says, “Hey, just a reminder, your next session is due this week, or your assessments are due,” so that we can get better adherence in a study like this. For this study, we did not use our Arthritis Power app, the platform that we typically use for studies. We did recruit from the registry, but people were participating in the study on another network’s platform. And so we didn't have as much control over managing the participant support in this particular study. But I think to ensure it we wanted to make sure that people can benefit from, from a training like this for mindfulness in general. And also, so that we can get more evidence about the effectiveness of these kinds of trainings, it'd be great to have higher adherence. So that's why a study like this, it would be, it'd be helpful, I think, to add some of those additional mechanisms for support to help people be more adherent.

RN: Were there any strengths or limitations of the study that you'd like to discuss?

BN: So, the participants were primarily female and white, the mean age of just 58 years old. And we also had a number of different conditions that were participating, rheumatoid arthritis, fibro osteoporosis. I think what would be helpful is to get to be able to drill down and look at more, more specifically, at condition by condition what we're seeing in the results. But we didn't have a high enough sample size to do that. It's 1 limitation. I think another limitation is what I was just talking about: that there was a pretty high rate of attrition in this study, and that participants volunteered to join the study. So, people were already inclined to be someone who was looking for study opportunities like this, even if they didn't all complete them. So, another improvement we would make is to be able to potentially recruit all patients from rheumatology clinics. So, you get a wider swath, a more representative and inclusive cohort of participants who can be part of this study. And then, as I mentioned before, I think in terms of just helping adherence to provide more support, in particular tech support, would be something that we would do for future studies.

This is reported in the abstract for this for you, or for this conference, but in a longer paper that we're writing up. We did use imputation methods to flesh out and get a bigger kind of synthetic database that we can do some additional analyses on. And of course, there's always the sort of inherent limitation of using imputation methods for to generate a database for mixed effects model analysis.

RN: How does mindfulness help to improve emotional distress in patients with rheumatic disease?

BN: We know anecdotally from patients that it's a big part of what we've seen in other studies that we've conducted: mental health is a major concern. And just the challenges of coping with having a chronic condition that that has some unexpected components of it. So, for example, people with rheumatoid arthritis may have flares somewhat unexpectedly, they don't always know whether a medication is going to work for them, or work in the long term. And so, it's important to be able to have strategies that can complement the medical care with something that helps them cope with the sort of emotional challenges of dealing with a chronic disease. And so that's why mindfulness I think, is so such a can be such a powerful tool for a lot of people to try to use in terms of dealing with the anxiety, to sort of unanticipated challenges of living with and treating rheumatic disease.

RN: Is there anything else that you'd like our audience to know before we wrap up?

BN: I think just a reminder that this mindfulness meditation has been around a long time, it evolved from Buddhism, from Buddhist practice, and has become, as you know, increasingly popular over the last couple of decades. And just a reminder that mindfulness is something that can benefit everyone. And it's becoming particularly helpful for us in the modern world as we get pulled into stuff that keeps us constantly distracted, constantly working at a shallow level. Mindful mindfulness can help us dig deeper and do more deep work and also be more able to cope with the sort of slings and arrows of daily life and especially the challenges of living with chronic condition.

RN: Well, Dr Nowell, thank you so much for speaking with me today. I really appreciate it.

BN: You My pleasure. Thank you for the interest in the study. We're excited to get the message out about this and hope to be able to offer more types of wellness programs like this through Global Healthy Living Foundation, CreakyJoints and Arthritis Power. So, thanks again for inviting me.