Exercise, technological integration ‘empowering’ for RA patients’ quality of life
The future of rheumatoid arthritis treatment has expanded beyond just managing the disease itself, according to Linda Li, PT, PhD, professor and Harold Robinson/Arthritis Society Chair in Arthritic Diseases at the University of British Columbia.
Li has seen a major shift in the direction of prioritizing quality of life among patients with RA, with a major focus on encouraging exercise and active lifestyles that can help patients manage their disease and prevent flare-ups.
In an interview with Healio, Li discussed new approaches in guiding patients with RA through an active lifestyle, the way the thought process changed in recent years, and developments in technological integration that can play a key role in helping patients manage their disease.
Healio: What’s the most effective approach for recommending exercise and lifestyle changes for RA patients?
Li: Part of it is understanding how the rheumatoid arthritis is affecting them. You want to know whether they’re having active joints or whether the disease is well-controlled because it affects how much they’re able to do. We know fatigue is a big issue for people with RA, especially when the disease is not well-controlled, as well as pain. All of those things need to be taken under consideration in the prescription.
The other part not just the knowledge and the capability to do it, but whether they have the environment and what motivates them to be physically active. People often know they need to exercise or being active to stay healthy and manage their RA, but if they have no means to be able to do their exercise or access facilities or equipment, or even just a quiet space to be able to practice the exercise they’re asked to do, then it’s not going to happen.
Part of it is to understand a little bit more about their environment, what’s available to them, and what’s the baseline. Have they been physically active and doing exercise to start with? What are they starting with and what do they need to build from? Part of it is understanding the whole person, not just the joint and physically how they’re feeling, but their life circumstances and context as well.
Healio: What are some of the best ways for patients with RA to continue to stay active?
Li: Knowing what to do is No. 1. People need to be reassured that what they’re doing is good for them and won’t hurt their joints more. Having the prescription and knowing what to do and knowing how to monitor their condition is important to help them to start and stay physically active and do exercise.
The other part for consideration is for people to understand and feel they’re making progress. Providing suggestions on how to monitor their physical activity, their symptoms and how their feel will help them understand how they respond to exercise overtime. Some apps and wearables can be super useful for people to monitor and understand what makes them feel good, what makes them feel worse, and if their disease flares when to back off.
In general, we tell people that whatever you feel you’re able to do, in terms of experience, physical activity, sport, if you do it and it doesn’t flare the joint up, you’re welcome to try. Someone who’s having active flare-up, as opposed to an Olympian living with RA, what they’re going to be able to do is going to be different, but having RA is not something that limits what people are able to do. Now, if they have a flare, usually water-based activity, in a pool, a warm environment helps to soothe the joint, the buoyancy helps people move their joints and move around. Those are good ways for people to maintain their exercise while having a flare, but the sky is the limit if someone is managing well. Some of the people who live with RA and are in competitive sports, oftentimes they work with a physiotherapist who understands RA and adjusts their workouts according to how they’re doing with the disease activity.
Healio: How has the understanding of best practices for quality of life for patients with RA changed recently?
Li: A long time ago, the recommendation was you rest, don’t overdo it, be cautious and careful. At the time we didn’t quite understand how being active and doing exercise can be helpful for someone with RA.
No. 2, the medical treatment wasn’t as good. You’d genuinely worry that if someone was having a flare, you do too much, you damage the joint and that goes downhill from there. But the world has changed. Better treatment, better monitoring, so when people are managing well the integrity of the joint can be relatively healthy, and exercise adds another element of making sure the joint moves well, the muscles surrounding it are strong, and that gives the protective mechanism to support people living with RA.
Two other things that are important: physical activity has an anti-inflammatory property. Not like you’re taking medication, but it provides support to the medication people are taking. The other thing is that people living with RA used to have shorter life expectancy. Now we see people with RA are aging gracefully, but it comes with aging with imperfect joints. They have reduced mobility and balance, and a high risk of falls. Being physically active not only helps the joint itself, but balance. It prevents falls, and it’s good for their heart and brain health. Those are some of the things that are quite different from before, and the attitude around how you can do whatever you like as long as you’re not flaring the joint up.
Healio: What kind of shift have you seen in the focus on quality of life?
Li: The whole attitude around supporting people to be active in the activity that is meaningful to them while living with RA, that’s part and parcel of improving quality of life. I think this shift comes from patients being more involved in their health care and research as well, so that’s driving that conversation around treating the disease and treating the person. That’s a credit to patients and patient advocates who really articulate the importance of not just the joints but considering them as a whole person and quality of life is really a main focus of the treatment.
There’s a lot more acceptance and practice around shared decision-making. They’re not just receiving what they’re told to do. It’s more around, “This is what we have from your assessments, these are the treatment options, what’s important to you? How can we work it around managing your condition while you’re able to enjoy quality of life?”
Shared decision-making is really helping to contribute to that and also many more recent things we’ve seen in the last decade.
Healio: How do you approach the mental and emotional aspect of treating a patient with RA?
Li: That’s why a multidisciplinary team approach is so important. No one health professional can do it all on their own. When it comes to mental and emotional health and it’s directly related to the disease itself, when it’s well controlled the mental health and symptoms get better, but some may need a little bit more.
I’m a physiotherapist by background so I can address the physical side, but sometimes people need a little more with counseling and support, if it’s something preventing return to work or job disability, it helps to ease some of the mental anguish. Occupational therapists or vocational rehabilitation need to be there, as well as psychological counseling may need to be there as well. It takes a team. It needs an approach that’s individualized.
And I’d say I recognize that access to care is sometimes not entirely equitable for a multitude of reasons, but sometimes we know what needs to be done and part of it is to really address the mental health aspect for arthritis management will need to address access to care.
Healio: What are some interesting new treatments or techniques down the line to help patients’ quality of life?
Li: I’m a health services researcher by background, and one of the things that we work a lot with is to include the use of digital tools. We work with computer scientists and visual artists to develop technologies people can use to track symptoms and get feedback as much as possible. The whole idea of, in the past several decades we as a field did a lot of work on supporting self-management and helping people develop skills and ways to live a healthier life. What we have not done well is give people the information they can use to self-tailor.
Leveraging on technology really helps people understand a little bit more. If my doctor asked me a question about how active I am, people would guess. Now we can actually look at whatever you use to track your steps and your physical activity and get feedback on how you’re doing over weeks and months. You can use that to track your symptoms simultaneously so you can have a better understanding of what helps, what doesn’t, what triggers and how I’m doing in the months and years onwards. That’s really empowering.
Integration of technology into the model of care for RA is one of the things I see as the most exciting piece. It enables people to have more information about themselves, but it can be scaled. As we have more tools and technologies, the price comes down, technology gets better, we have more data using AI, for example, to tailor things more for giving feedback or even prescribing. That would be one area of innovation that excites me the most, because it has the potential to change how health professionals manage RA and how individuals self-manage. There’s nothing better than that.
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