S1 Episode 1: Defining and Measuring Wellness in Psoriatic Arthritis

This transcript has been edited for clarity.

Elaine Husni, MD, MPH: Hello. I'm Elaine Husni, and I'm a rheumatologist at the Cleveland Clinic with a special interest in caring for patients with psoriatic arthritis. I co-direct the dermatology/rheumatology clinic here at the Cleveland Clinic. I want to welcome everyone. I'm super excited to chat with Dr Len Calabrese and Dr Rob Saper.

It's really exciting to start this podcast by tapping into the most influential people I know in this wellness space. Dr Calabrese, as many of you know, is vice chair of our Department of Rheumatology and Immunologic Diseases and section head of our clinical immunology department. We want to hear from him how he entered the wellness space and how he delivers it personally, as well as in rheumatology practice. Dr Rob Saper is the chair of the Department of Wellness and Preventive Medicine at the Cleveland Clinic. We are so lucky to have been able to recruit him from the Boston Medical Center, where he was the founder of the Program for Integrative Medicine and Health Disparities.

So without further ado, I'd like to tell you a story of how I got involved in wellness, or maybe open to wellness, even before I knew how to articulate it. I grew up in a predominantly Chinese community in Brooklyn, New York, and English was my second language at that time. Whenever I would have any minor headache or cramp, my parents would make a soup. So, I grew up really taking care of some of these common illnesses with food, and that opened up my eyes. It was sort of like chicken soup mentality, but on steroids; we had a different soup for every different type of ailment that we had. I didn't take my first pill until I entered college and my roommate gave me something for a cramp. I was like, "Oh, what's this?" I'd love to hear from the both of you. I'll start with Len. How did you become interested in wellness or be considered an expert in wellness?

Leonard Calabrese, DO: Well, I will also add that Elaine still brings me soups anytime that I have a malady, and with very specific instructions on which ones to eat. So this is a validation of the concept. You know, I am a skeptic. I'm a clinical immunologist, and I got into this 15 years ago. I was confronted by increasing numbers of patients with medically unexplained illnesses, in particular chronic fatigue syndrome, which I had done a lot of research in and seeing patients with immunologic diseases from all over the world. There wasn’t a person that, if given the opportunity, wouldn't ask, "What else can I do?" For some things we had no medical therapies; for other things, we had advanced medical therapies, but there was still that lingering notion of "what else can I do?" That forced me to start looking at the evidence in the domains of wellness, and that was my road to both care and research.

Husni: Thank you. Really interesting. And thanks for acknowledging that you're drinking my soups. Rob, I would love to hear how you got into wellness.

Robert Saper, MD, MPH: Thank you, Elaine, it's a pleasure to be here. However, I have yet to receive a soup from you, and I welcome and look forward to that opportunity. When I was a third-year medical student at Harvard Medical School in the 1980s, the repeated rotations, being on call, and the stressors for a young physician in training in their 20s really caused a lot of stress and a lot of burnout for me. And so I decided to take a year off between my third and fourth years and study health and healing, and that led me on a journey to a yoga center in western Massachusetts called the Kripalu Center. At that center, I was able to observe and participate in a program they had for patients with chronic illness, and the patients had daily exercise. They ate a vegetarian diet. They did yoga and meditation. They were cared for by physicians and staff who modeled healthy behaviors, and this all took place in a beautiful environment. And to make a long story short, being part of that experience had an enormous impact on me. I ended up staying there for 8 months, and the experience was such a contrast because I felt the healthiest I had ever been. And it was in contrast to perhaps the least healthy I had felt, during my third year of medical school. That really set me on a journey and a commitment, much like Len said, to pursue and find out what else outside what we normally learn in medical school (medication, surgery, etc.) can be helpful for patients. And that's the journey that I've been on for 30-plus years, and ultimately the journey that brought me to Cleveland Clinic.

Husni: Excellent. Thank you so much. So before we take a deeper dive into wellness, I started this way because I know that our personal views sometimes can spill over to how we communicate both with our patients and with our friends and family. And the pandemic, as you know, has probably taught us how to shelter in place and stay at home, which then has created a lot of buzz around the importance of wellness, I think. But bringing it back to patients with psoriatic diseases who we treat in a more chronic nature — Len, can you tell me how you would define wellness?

Calabrese: It is a word that you know has some fuzziness — the 95% confidence intervals of how to define it. I look at wellness as optimizing body, mind, and spirit. I think it can be summarized this way: Wellness can be recognized when our lives are going well. I use that a lot in my discussions on this, and I think the next cut is at a scientific level. I think that that's still a work in progress; what optimum biomarkers are there for wellness are still evolving, but I like to keep it that way. I think people understand it that way and the message carries well. I'd love to hear what Rob says.

Husni: I love your term "evolving"; this is really such a new, innovative area and I think that's so true. Rob, when somebody asks you what you do — obviously you are defined by wellness more so than Len and I in many ways — how do you define it to your patients?

Saper: Much like Len articulated, I define it as the pursuit of optimal physical, emotional, social, and spiritual health. Many people, when they hear the word "wellness," think about a spa or a weekend retreat, or only something that people with financial means can do. But really, it is a whole-person approach to health, which is what we physicians deal with all the time. So, on the physical level, it's energy level, BMI, physical stamina, emotional level, the degree of stress or anxiety or mood trouble that we have. But the social piece is also really key: our friendships, our sense of connection, our sense of family. And what I mean by spiritual health is not religion per se, but it's for people to have a meaning or purpose in their lives. And of course, that comes from so many different sources. But these components come together as comprising health. Now, in terms of measuring it, the good news is that we've made progress in patient-reported outcome measures to assess these different domains. I think we've come along well in that; we have reliable and validated scales to measure many of the qualities and characteristics that I described. But yes, we don't really have a full picture of the biomarkers that correspond to all of them, and that really is the work in progress.

Husni: I agree. I love your sort of spectrum of wellness, and it's important to remember that there are short-term and long-term goals. So thank you. Like all things in medicine, we're really now held to a standard where we are measuring everything.

So Rob, like Len and I, when we see patients with psoriatic arthritis, we need to measure their psoriasis, whether it's a body surface area or something more extensive, like a Psoriasis Area and Severity Index (PASI) score. Then for psoriatic arthritis patients, those who have joint pain, we're looking at joint counts. Could you tell me a little bit about how we can actually measure that metric or tell a patient that they are making some positive inroads into wellness? How can we measure that in a way that I'm used to measuring things — sort of like on the autoimmune scale? We'll go back to you, Rob, and then to Len.

Saper: Great question. In every patient with psoriatic arthritis — and again, I am not a rheumatologist, but I am a specialist in humans and their illnesses — there are psychological consequences, there are social consequences, and there's impact on someone's function. So as a rheumatologist, you count and measure the joint swelling; in dermatology, we measure the degree of surface area and perhaps pruritus that it's causing. But we have tools such as the Patient-Reported Outcomes Measurement Information System Global-10 (PROMIS-10) or the 12-Item Short Form Survey (SF-12) that measure the degree to which psoriasis impacts their ability to go out, have social relationships, have social connection. To what degree does the psoriasis cause them an inhibition to connect with others and therefore a loneliness? And all of those things can be measured. Similarly, in terms of the pain of psoriatic arthritis, we have many terrific patient-reported measures about how people are functioning. Does it impact their capacity to walk, to do fine-finger movements, to work, to do chores, to cook? These are some of the functional consequences of psoriasis, and patients care about them. They care about them equally. It's very exciting to see more and more disease-specific scales on health-related quality of life for conditions like arthritis.

Husni: Yes, I agree. Thank you. Len, how would you go about trying to measure wellness between your patients between visits, after visits?

Calabrese: Everything that Rob says I'm in accord with. I also mentioned that we on the immunology side take care of these diagnoses. The diagnosis is what we give the patient. But I'm a big fan of Eric Cassell, a great medical humanist, who said that every diagnosis is experienced by the patient and that all illness is deeply personal. So all of these domains that Rob discussed are very important. And many of the symptoms that we often ascribe to immunologic disease states, whether it's psoriatic arthritis or rheumatoid arthritis or lupus or multiple sclerosis, can be confounded — particularly due to things like pain and fatigue — by domains that are outside of the pathophysiology of the underlying disease as we know it. Fatigue can be affected by our sleep and our exercise patterns, and pain can be amplified by stress. So I use all the PROMIS scales that we have available in our department. It's quite a nice package that looks at global health, pain, fatigue, and interference, as well as mood. That's a good start.

Husni: I think it's important to note that in addition to all of the joint counts and lab tests, there are measures that you both mentioned that are very important and important to the patient, as Rob said, which I think are really good points to add to during a visit. As we wrap up, I do want to ask you: What are the first three ingredients that go into successful wellness definition? Rob?

Saper: What we eat is one; increasing evidence shows that certain patterns of eating worsen inflammation and other patterns improve it. And then the second piece is stress, and this speaks to Len's point of the ability for stress to exacerbate our pain experience. And then lastly, social connection. It's so much easier to get through a chronic illness when you have a partner, a family member who's right there for you and supports you.

Husni: Excellent. Len, what are the first three ingredients that go into the definition of wellness?

Calabrese: Well, this is easy because I agree with those three that Rob mentioned. But I like to say that sleep is the new frontier in immunology; without healthy sleep, wellness is greatly compromised.

Husni: I think those three ingredients nicely sum up everything that we may want to remind ourselves about wellness, and probably how to be a good person as well, right? Len and Rob, thank you so much. I am thrilled to have shared this podcast with you, and I learned a lot from the both of you.

Resources

American College of Rheumatology

NIH: Science-Based Health & Wellness Resources for Your Community

National Psoriasis Foundation: Living With Psoriatic Arthritis

Definition of Wellness

Why Mindfulness/Meditation Is a 'No-Brainer' for Health-Care Professionals

Exploring This Issue: Whole-Person, Whole-Systems Health and Healing

Measures of Quality of Life Mentioned

Patient-Reported Outcomes Measurement Information System Global-10 (PROMIS-10)

Progress in Assessing Physical Function in Arthritis: PROMIS Short Forms and Computerized Adaptive Testing

12-Item Short Form Survey (SF-12)

Psychometric Evaluation of the 12-Item Short-Form Health Survey (SF-12) in Osteoarthritis and Rheumatoid Arthritis Clinical Trials

Comments

Commenting is limited to medical professionals. To comment please Log-in.

Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.