Video
Impact of PsA on Quality of Life
Leonard H. Calabrese, DO; Sheetal Desai, MD; and Ana-Maria Orbai, MD, MHS, discuss the impact of psoriatic arthritis on a patient’s quality of life [QoL] and describe tools for measuring QoL.
Anthony M. Turkiewicz, MD: I know this is part of your expertise and purview of psoriatic arthritis, so I’d like to focus a little on QoL [quality of life] measures, specifically looking at things like mental health and any of the tools used to manage quality of life, including…whether to use them in clinical trials or in clinic. Can you give us a brief overview of that?
Leonard H. Calabrese, DO: Anthony, you’re asking me some big questions.
Anthony M. Turkiewicz, MD: That’s right.
Leonard H. Calabrese, DO: I like to tell the fellows that we’re very interested in how patients with psoriatic arthritis are doing with their disease. There are things we’re interested in—in their tender and swollen joints, in the labs, and getting this disease under inflammatory control. There are things the patients are interested in and sometimes are not, or rightly shared. Those are domains that I call the patient’s chief concerns. Patients with psoriatic arthritis, like patients with other forms of inflammatory arthritis and inflammatory diseases, are also concerned and bothered by pain in general. It may not be limited to the joints.
There are studies that have shown that many patients value a day without fatigue as much as they do as a day without pain. Like other IMiDs, comorbid mental health diseases or disorders—like depression and anxiety—are overrepresented. Attendant to that are other things that we can measure, including sleep disturbance and self-efficacy. How do we do this? I’m going to give a short answer, and I’d love to get other people involved. The most important thing is engaging a patient, giving them that minute to express their concerns. There are some easy things. A lot of us use RAPID3 [Routine Assessment of Patient Index Data], and that gives us half DI [disability index] and global patient assessment and global pain.
In our clinic we routinely use PROMIS [Patient-Reported Outcomes Measurement Information System] scales, which are free and available to all of us. We’re getting used to them. The short forms can be done in a few minutes, and if you’re a little tech savvy in your practice, you can have it incorporated in your EMR [electronic medical record]. It’s very simple for patients to look at because they have T-scores, and they’re going up or down like a speedometer to measure global health, fatigue, and mental health and how these interfere with their lives.
On the 1 hand, the most important thing is to hear the patient and engage them. There are some 3 kicks at the ball but looking at RAPID3 gives us a lot of information. There are those who are more interested and more engaged, and this pays off, particularly if the patient can share many other scales. I wonder what other people are doing.
Anthony M. Turkiewicz, MD: I was thinking about that. We just started a new EMR this week, so I’m in the throes of a mess. One thing that’s horrific about it but also good is the ability to get more than cat out of it. But you bring up the PROMIS. It’s something we were able to incorporate. It’s the unmet middle of the road. I’m intrigued by being able do this efficiently, but don’t detract from the discussion with the patient. We have some folks here, and I was just telling them: don’t get behind that computer. Listen to the patient and let them listen to you.
What’s great about these objective measures is that you can track it. The patient knows, they listen to them, take an interest, and share it with them at follow-up visits. Nothing is perfect but thank you for that input. Ana-Maria and Sheetal, any thoughts on PROs [patient-reported outcomes]?
Sheetal Desai, MD: In addition to the PROs, sometimes people are so focused on scales that we forget some of the basics of medicine and focus on social history. One thing I teach the fellows because social history has fallen off, is that our trainees’ acquisition of information is focusing on the social history, and we do a lot of in-learn staffing.
The fellow sees the patient, comes out, and then tells me, “Dr Desai, I’m ready to present,” and we go back in the room. When we do the entire presentation in the room—and we’re done with the history, and the physical, and then going over the lab—I often turn to the patient and ask the patient, “What’s important to you, and what would you like to do?”
Then I turn to the fellow and say, “What do you think you’d like to suggest for this patient?” We all have a shared decision-making approach. I feel when you involve the patient in their entire care and do the full thing in the room with them, their perspectives come out and are made loud and clear. This is in addition to using things like PROMIS and other PROs, but sometimes going back to the basics of bedside medicine, you pick up a lot with the patient.
Anthony M. Turkiewicz, MD: That’s often overlooked. Ana-Maria, any thoughts?
Ana-Maria Orbai, MD, MHS: That’s wonderful. At our clinic, we also collect PROMIS. I’ve been trying to find a way to connect PROMIS with the patient perspective and to involve them in tracking disease. We recently validated a cutoff on the PROMIS physical function with HAQ-DI [Health Assessment Questionnaire Disability Index]. If they score on PROMIS physical function more than 41.3, that’s the equivalent of meeting the MDA [minimal disease activity] cutoff of a HAQ-DI of less than 0.5.
Then I show them the PROMIS scores, which with colors is very patient-friendly: green would be close to the population, but we didn’t have standard deviation. That makes it easy to communicate, and then we look together how that feeds into the MDA. Others need those checkboxes, which we have in Epic. I find that very useful. They know what we’re doing. They know what we’re tracking, and we can look from visit to visit. That’s an opportunity to involve them.
Leonard H. Calabrese, DO: Those are both extraordinary and important points: sharing these things with the patient. If we don’t do that, it loses tremendous value. Sheetal, your point is so important. That patient-facing moment in the room is so important because 80% of empathetic communication is nonverbal. We can spend the rest of the night talking about this, but if you want to talk about what the patients are interested in, you have to hear them and sense what’s going on. This is a good start.
Transcript Edited for Clarity
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