Intro

Hello and welcome to this episode of the Conference Conversations Focus 2022 Podcast Series. In this episode, Dr Christian Barton musculoskeletal physiotherapist, post-doctoral research fellow and the communications manager at La Trobe Sport and Exercise Medicine Research Centre and Dr Felicity Braithwaite physiotherapist and early career post-doctoral fellow with the Body and Mind Research Group at the University of South Australia discuss osteoarthritis and some of the myths surrounding this debilitating condition. Before we dive in this series of Conference Conversations, Podcasts has been brought to you by the Physiotherapy Research Foundation, supporting the promotion and translation of research and supported by Pain Away platinum and content sponsor of the PRF. Let's get started.

Christian

Hi, I'm Christian Barton from La Trobe University. Today have the great pleasure of speaking to Felicity Braithwaite about some of her research related to knee osteoarthritis. Before we start, I'd just like to acknowledge the traditional owners of the land on which we meet today, the Wurundjeri people and elders past, present and emerging. So welcome to the podcast Flick.

Felicity

Thank you very much. Thanks for having me.

Christian

My pleasure. I'm really looking forward to chatting with you. I think you've got a really unique research role at the moment. I think it'd be great to let the listeners know what you're currently doing to start with.

Felicity

Yeah, sure. So I'm a post-doctoral fellow at the University of South Australia and I've been really fortunate to receive a fellowship via the Arthritis Foundation of South Australia. So they're supporting my own line of osteoarthritis research for the next three years. So very lucky to be the recipient of that. And as part of that fellowship, I really wanted to form strong partnerships with people with lived experience of osteoarthritis to shape the direction of the research I'm conducting. So I'm a year in now and I've been working with six people with osteoarthritis and they've come up with some brilliant ideas for us to go forward with for this fellowship. So I'd love to share that with you all today.

Christian

Great where did you find those six people?

Felicity

They all volunteered. We put out some advertisements via Arthritis SA and we also looked at some of our databases of people with osteoarthritis that have participated in previous research studies that we've conducted. So we actually had one guy who completed a clinical trial that we ran that involved pain science education and a walking program over 12 months. So having his insights on how he went with that intervention was really useful, as well.

Christian

We've been doing a lot of work in this space too and trying to understand what education needs are for people with osteoarthritis, what physios believe we should be delivering. One of the things that's come up in our research has been an importance of addressing myths and misinformation. I think you've had some similar findings.

Felicity

Yeah, so one of the aims of my initial co-design workshops that I conducted with these six consumers was to identify the most important myths that create barriers to best practise conservative care, so things like exercise and weight management. And yeah, I think that is a really important thing in osteoarthritis because people with osteoarthritis tend to have really specific beliefs about their condition that can be really unhelpful. So we wanted to ask our consumers what they thought the most important myths were and we identified seven, which I can talk you through now if you like.

Christian

Yeah, I'd love to hear them.

Felicity

Sure. Yeah, so the classic one that we've all heard before is the old wear and tear. And I think that one is the most relevant to us as physiotherapists as well, because we have a person with osteoarthritis come in for treatment with physiotherapists and we want to prescribe an exercise program. And if they believe their condition is caused by wear and tear, that's pretty counterintuitive. It's going to create more damage in their joint. But what the evidence shows us is that exercise is actually one of the best things you can do for osteoarthritis. So that is an actual myth, it's not correct. It's really pervasive and a lot of people still have that belief. And so we need to find ways of overcoming that for them to engage with exercise.

Christian

So how do we overcome that as physios? What do we do to tackle that? Because my patients are told this by surgeons, by GPs, they see it on the news, how do we tackle it?

Felicity

Yeah, it's really tricky and it's something we also addressed in our initial co-design workshops with these consumers is how can we convince you to engage with exercise if you had this wear and tear belief? And I think a few of their tips were quite interesting. So one thing they did bring up was people don't like to be told that they're wrong. So you can't just tackle it head on. There's some coaching required and you have to kind of gently chip away at these beliefs. And I think a really nice way of chipping away is telling stories and our consumers really highlighted this as well, is the power of a testimonial of a real life story of someone just like them who has had success with a conservative management program or an exercise program that can be really inspirational. It shows it can work and it's more powerful than, than statistics and data to people with lived experience because it shows them that, yeah, this person's just like me and they did it.

Christian

Yeah, I think stories are really valuable and really important. I think you have to have that ability to connect with someone and see yourself in their place. What are some of the other myths that have come up?

Felicity

So as I said, we have seven. The other classic one that we hear all the time is the old bone on bone. That one's all about having no cartilage left. It's related to imaging findings where the joint space between the bones appears to be disappeared, but actually there's always some cartilage in there and it's never actually bone on bone. And the important thing to remember is that no matter how severe your x-ray or scan looks, exercise can still be helpful.

So regardless of the severity of changes, I think it's still important to give it a go and try conservative management before jumping to a joint replacement. So that's how we try to address that myth. We also had one around the inevitability or the progressive decline. My OA is only going to get worse and there's no hope. That was a big theme that came through the workshops with my consumers. And so yeah, I think our job as physios is to really find ways to provide hope and show that you know, it's not predetermined and you can improve despite what your scans are showing despite what you've been told by health professionals. For example, the bone on bone, it doesn't actually matter. You can still improve.

Christian

I assume the lived experience stories help with that too in terms of trying to address it.

Felicity

Totally. Those testimonials are so important. And I think another thing that's really important as well is talking about people that have scans and that look quite severe and have quite significant changes, osteoarthritic changes, but sometimes these people can have no pain. So we see people with quite bad looking scans that report having no pain or minimal pain. And I think that can be really useful in providing hope as well. It's like you see this scan that looks just like yours, but this person has way less pain and is living their life and still enjoying it.

Christian

And you've got a couple more myths, I'm sure.

Felicity

Yeah, the other one is kind of the flip side of the wear and tear. It's rest is best. Our co-researchers said that often when you get an osteoarthritis diagnosis you're only told what not to do and you're told to stop doing the things that you love and just rest keep it still until you can get a replacement.

Another myth that was actually brought to us through our scientific panel, so we actually had a group of experts that were involved with OA management involved in this process as well. So we had a physio, two surgeons, a general practitioner, a rheumatologist and a science communication expert. And they added that they hear a lot of the time that people say that they can't lose weight and particularly like before they've had their joint replaced, they'll say, I'll wait until my joint has been fixed and then I'll lose weight.

But that's not what happens in the real world. People will get their joint replaced and often end up gaining weight after that. So that is a really important myth to address as well so people don't end up on that trajectory.

Christian

It's interesting that about the weight, we see that in some of our research, people think that if they get a joint replacement they'll be more physically active after that. We see that in a lot of research that doesn't happen either.

Felicity

Yeah, exactly.

Christian

Those expectations around surgery are really interesting.

Felicity

Very interesting. It's seen as this ultimate cure and it's certainly not the case. We see people having long standing pain after surgery as well. Up to 20% of people will report that, but that's just not, people aren't made aware of those sorts of statistics unfortunately.

Christian

And other myths?

Felicity

What am I up to? I think I have one more or two more. Two more. Surgery is the only solution is a big one. So people often will have a diagnosis and then told to go away until it's really bad and then we'll replace it. So they're just waiting until they can't walk anymore and then they get it replaced. They don't really try anything else and it's just seen as the curative solution, inevitable solution.

And the other myth that I thought was quite a novel one that came up was around this ageism associated with osteoarthritis and you know, I have OA because I'm old and there's nothing I can do about that, it's just part of getting older. We see young people with osteoarthritis all the time. We're actually doing a case study at the moment of someone who is 39 years old with really severe pain and disability and osteoarthritic changes on scan as well.

So it's not really, I mean it's more common in older people obviously, but yeah I think there is a lot of ageism that comes with that and it's, and you know, they feel that from the health professionals as well. It's like, you know, just add another health condition to the list you're getting older. Yeah.

Christian

Well it sounds like there's a lot of things that we've got to address as physios in terms of those myths. I think you probably need to spend quite a bit of time with education to help with that. I found your methods really interesting, Felicity, in terms of the co-design process is something I've definitely embraced with my research in the past few years and I think it's hugely valuable to get that voice of the person we're actually trying to help into our research.

Can you tell me a little bit more about how you went about doing your co-design workshops and things like that? How did you come up with all your great information and new knowledge?

Felicity

We were really lucky to work with some design thinking experts from the University of South Australia, professor Ian Gwilt and Dr Aaron Davis. They're from UniSA Creative and Aaron is actually an architect and he has been using co-design for a long time in his field to work with people and consumers in particular to design houses and buildings.

But he's translated that across to health and he's now doing a lot of co-design in health, but the way he thinks is just so creative and he really helped us design the workshops to really elevate the lived experience and draw out really creative information from our consumers. And one of the ways that we really tried to do this was to really highlight the equal role of the consumers in the direction of my Fellowship research and allow them to take some ownership over the research direction by breaking down any perceived power dynamics that might be perceived between the research team and them as consumers.

So one of the ways we did this was to reframe their contribution as co-researchers rather than participants, they’re co-authors on the manuscript that we've written up and they've been really involved with writing some grants as well to try and get some money to fund the research that we want to do. And we use lots of other participatory strategies as well to really help them understand that they like, they are actually an important voice in the direction of the research that we're doing.

And yeah, we use lots of different prompt questions and activities as well. So for example, one of my favourite activities that we used was called perspective taking. So we got them to imagine that there were someone else with osteoarthritis that's quite severe and disabling and they have all these, these beliefs or you know, the myths I was just talking about, they believe it's a wear and tear disease and that they're bone on bone. And then that creates some detachment from the story and minimises some sensitivities around sharing their thoughts and beliefs and any sensitivity about being wrong as well.

So it really unlocks their creative thinking and their ability to share their thoughts. That's, yeah, the approach we took and I think it was really, we got some really rich data from that process.

Christian

Would've loved to have been a fly on the wall in those workshops. They sound really, really interesting and fascinating. Did you discuss with them why they believe those myths are so pervasive in our society? Is that something you talked about?

Felicity

Yeah, we did and there's literature supporting this as well, but basically these myths come at people from all angles. They come from health professionals still unfortunately we see in the qualitative literature that a lot of health professionals are using inaccurate biomedical language to describe osteoarthritis, calling it degenerative, still using phrases like bone on bone and wear and tear. So a lot of it comes from that and I think that's quite sticky for people because if it's coming from a credible health professional people are going to believe it.

We also see it in the media and on online information sources as well. More biomedical treatments are promoted a lot more than the best practise conservative management that we'd recommend as physios and that the evidence supports as well. We see, yeah, drugs and surgery promoted way more. Some of your work has shown that actually I think it was like three times more, in the media, the pharmaceuticals and surgical approaches were promoted than best practise conservative care. Is that correct?

Christian

Yeah, around three times more. So that's some work we've got underway led by Dr Anthony Gough who's working with us on that. Yeah, the media's really interesting because they spread a lot of misinformation and it's really hard to try and change that because I think exercise is not sexy, right? And losing weight is not sexy but the injection or the surgery or the new drug that sounds much more exciting or the new stem cell treatment that seems to pop up every couple of months.

Felicity

Exactly the quick fixes and I think the health system is also set up to promote those sort of quick fix solutions as well because you know, unfortunately the system at the moment Allied health is quite inaccessible to people with osteoarthritis so it's much easier to go on a surgical wait list at the moment.

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Christian

I think it's pretty crazy in our health system that you can actually get surgery, do rehab, get your rehab for free. If you try and do the rehab to try and avoid surgery, you've got to pay for it in many settings. It's kind of nuts but that's the health system we work in.

Felicity

Exactly, yeah it's a big challenge that we face.

Christian

How do you think we solve it? Like it's great, we've identified myths and I think we know we need to change them in the way people think, but how do we do it do you think?

Felicity

Yeah, good question. I think we need to create societal change. As I said, these myths are coming at people from lots of different sources. So I'm looking at developing some resources that bust these myths to implement at the community level or the societal level, particularly targeting consumer beliefs to try and create a grassroots bottom up movement towards shifting these beliefs around surgery is the only option, towards exercise actually can help. And then also that will hopefully encourage consumers to seek out allied health and create some pressure against health professionals that are still using these outdated terms and promoting these outdated third line sort of treatments before trying anything else.

Christian

The health professional part's Interesting because I think you're right, maybe the consumers can help to change the way they talk, but at the end of the day I wonder if there's other ways, we might be able to reach health professionals as well. I mean I know I was taught wear and tear and bone on bone and in my early stages of my physio career, I went to professional development events and they were delivered by surgeons and they would focus on the structure and focus on surgery. Yeah. Is there other ways we can get to health professionals? What do you think?

Felicity

Yeah, it'd be good if we could change university curricula. I think that would be a good target as well. But yeah, I think it's something we've talked about a lot about how we can shift beliefs of health professionals and I think it's really difficult, particularly health professionals that have been doing it for a long time, shifting their beliefs and behaviours can be hard. But we have actually seen in low back pain, there were some media campaigns conducted about 20 years ago now, so TV ads busting back pain, myths again about rest is best, it was called back pain, don't take it lying down. And we actually saw not only shifts in beliefs of people with back pain but health professionals as well and reduced compensation claims and things like that. So potentially that could be an avenue that we could try.

Christian

I guess if we target society health professionals are part of society, right. So maybe that might be effective. No, it's really interesting, we've got some big challenges. I guess, as a clinician, going back to the health professional things, like this is a challenge we all face. We might be seeing someone trying to bust these myths but then they go to their GP or go to the surgeon and gives them very different information like you need to have surgery because you are bone on bone. Any tips or ideas about how we tackle that as a clinician?

Felicity

Yeah, so I think that's always very hard as a physio because if someone's been told that by a surgeon there is a perceived hierarchy there as a consumer that they, the surgeon would know best. I think again we need to use those testimonials with people and explain that, you know, we've got patients that have engaged with these conservative strategies, exercised and they've reduced their pain and they haven't actually needed surgery. There's some good data coming out now showing that people that actually engage with pre-habilitation and exercise programs before having surgery they end up not having surgery at all even if they wanted the surgery to begin with.

So telling those sorts of stories and sharing that information with people could be really helpful. And yeah, I think as physios we do really need it sort of, we are the experts in this conservative best practise management and we need to take ownership of that and endorse it and promote it to everyone in society and really including other health professionals including the support networks of people with lived experience of osteoarthritis to improve the uptake of it and overcome these negative beliefs that are creating barriers for people.

Christian

Where do guidelines fit? Like we have plenty of osteoarthritis guidelines who tell us we should be trialling these first line care approaches first and not going straight to surgery. Why do you think they don't work?

Felicity

I think the guidelines are good. They do recommend best practise conservative management as the first line strategy and that, you know, that reflects what the evidence is telling us. But I think some of your work has shown that they don't actually describe how to actually implement that and how to actually get people to engage with it and that's the evidence to practise gap I see, and I'm trying to address with some of my co-design stuff is asking people with lived experience, what are the real barriers? What is at the root of the issue of engaging with exercise? But yeah, you have some work in the guidelines space that's shown and with consumers that it doesn't really align as well.

Christian

Yeah, so I've had the pleasure of working with some great PhD students recently, Ally Gibbs, at the moment's doing a systematic review looking at guidelines and some of her early findings look at high quality ones and the high quality are on all different domains and ways we might assess guidelines until we get to the applicability part. And exactly the point you make is they just don't tell clinicians how to actually deliver it, which is interesting and if we look at clinician's use of guidelines, actually very few clinicians who even use guidelines. I think when we did some research on physios about 10%, one in 10 could name a guideline related to osteoarthritis, but that's not a health professional's fault. If they're not useful to them, you're not going to bother to pick up the paper if it's not going to actually tell you what to do. So I think that's a big challenge.

And I think some of the work that Anthony Gough did with us at La Trobe University showed that there's all these different patient education priorities and linking to the myths that you've been talking about and they had content that they'd like to receive from a physio or from a health professional and none of that's mentioned in the guidelines. And even us as physios, we also did some similar studies getting physios to prioritise what should be provided to patients and a lot of the great ideas that come out from physios, again there was no guidance or no recommendations in the guidelines about how to actually implement it and to do that.

So how to bust the myths, how to talk to someone about surgery, how to talk to someone about the value and the benefits of physical activity and exercise and how it's actually safe. So I think we probably need to get some people doing some better work on guidelines may help that health professional side of things. But I think your point about, I guess getting stuff out into the media and into society is probably going to be our best bang for buck, would be my thought.

Felicity

Yeah, I agree.

Christian

Any other tips for people like physios or people who might be managing a way out there? What tips would you have for them and how they should manage their condition?

Felicity

Yeah, so I think it's important to remember to treat the person and not just the joint. Osteoarthritis is one of those interesting conditions that’s still really looked at as a very biomedical condition, but it’s all pain. So we need to consider the biopsychosocial model with osteoarthritis as well. I think it's largely ignored the psychosocial aspects, but that can be really powerful when we’re testing that in a big clinical trial at the moment focusing on pain education and addressing the psychosocial aspects as well as the biological aspects.

There's new evidence coming out as well showing the influence of diet and the microbiome. So I think a really holistic approach to managing osteoarthritis is needed and we as physios are best placed to address those things. So I think yeah, we have a real important role to play in the management of osteoarthritis.

And I guess my other major tip based on my experience running a clinical trial involving exercise is we really need to manage people's expectations when they start an exercise program. A lot of people with pain and osteoarthritis believe that pain equals damage and obviously when you're starting a new exercise program, particularly if you've been sedentary for a while, it's going to hurt. So before they start an exercise program, they have to know that and they have to be told, you know, this going to be hard, it's going to take a long time, it's going to hurt, but you're not doing more damage just because it hurts.

And I think we have a really important role to play there in explaining that so they don't feel like they've failed and give up straight away when they start an exercise program. We hear a lot of people who are on surgical wait lists, they say they've tried exercise but, you know, it just hurt too much and they couldn't do it. And I think that's because their expectations haven't been managed from the start.

Christian

You make a good point about getting them to try enough exercise. I think it's where you were going. It's like any medication, if you took half a dose of what you're meant to take for your antibiotics and your virus come back, you would know why, right? You didn't take your full medication. So I don't think exercise for OA is any different and we know from some of the research that if you don't do enough, so let's say you maybe only do it for two or three weeks, you're very unlikely to get benefits from that. If you go for at least six weeks you start to see that there's a good likelihood that you get benefit and you go to 12 weeks, it's even better. So getting that buy in is probably really, really important.

On the pain and damage perspective, what's your strategies for getting people to understand that? How do you go about it?

Felicity

Yeah, so it's all about explaining the science behind what pain is and how it is a protector. An analogy I like to use is if you grab your ear lobe and start pinching it, you're going to start feeling pain long before you actually are doing any damage to your ear lobe. And that's how pain works and particularly with chronic pain that that protective alarm system is much more sensitive. So when you start putting pressure on your joint by starting an exercise program, you're going to start getting pain way, way, way before you're doing any sort of damage. I like to use little stories and analogies like that to really explain what pain is and how it works and I think that helps people understand that, oh okay I'm sore but I'm safe.

Christian

Do you point them in the direction of any resources out there that they can use to help understand that side of things a little bit better?

Felicity

Yeah, so one classic resource that we often use and that we're actually testing in a clinical trial at the moment is the Explain Pain Handbook. That is all about understanding what pain is but also what the contributors are to your pain experience beyond the no susceptive or the joint itself. So some of the psychosocial factors as well. So we call them safety in me, and danger in me with the Protectometer, you might have heard of that one before? Where you get people to identify different things in their life that might increase or decrease their pain from a day-to-day basis.

And they might be things that you might not even really, you might be quite surprised by, for example, you could be walking with a friend that you, and you're having a chat and you have way less pain because you're with that friend and you're distracted and you're happy in a good mood. And that could be a safety in me or a SIM. So helping people understand those sorts of little tricks that can reduce their pain while they're exercising can be really helpful. And also understanding their DIMs or danger in me as well. For example, getting a scan and being told your bone on bone can make your pain experience worse because it's quite threatening and your alarm system or your danger protection system or your pain system will be more sensitised by those sorts of messages.

Christian

And I think that you can get links to find that book in the Tame the Beast website, right?

Felicity

Yes. Yeah, if you Google Explain Pain Protectometer or Noy Group, Noy Group sell them as well. You can get online versions or paper versions.

Christian

I use the, I mentioned the Tame the Beast website as I use that quite a bit and link people to the book from there because there's some great videos and other resources.

Felicity

The Tame the Beast video is great. So what about you Christian? I know you have some resources that you've developed with the people with lived experience of osteoarthritis.

Christian

Yeah, so we've used some very similar co-design workshop approaches that you've done of developing an online platform, so education and self-management toolkit. So Anthony Gough, who's a Singapore based physio who worked with us at La Trobe doing his PhD, did workshops with people who have lived experience. We did a couple of those. We did one with exercise and other health professionals and then we had some expert review of the resources. And so there's a whole heap of multimedia online resources about exercise programs, about weight management, about understanding the condition. Busting, some of the myths that you've mentioned, which is why I love hearing you talk about this because we've had all the same types of things come up in our co-design workshops as well.

And there's a website set up called myknee.trekeducation.org. And so there's a whole heap of different resources there that people can access. And as a physio you can use that to help guide your patient through towards a journey of self-management and exercise and a whole range of things. And actually, people can access the site even without you. So if you've got friends and family and you want to give them some good resources to use, it's also good to pass it on even without us as physios providing the care, it works really well. So Felicity, before we finish up, do you have any final tips?

Felicity

Yeah, I think for people with osteoarthritis, I think it's just really important to be open to strategies other than the more invasive ones, being open to trying exercise interventions and educational interventions, they can be really powerful. The evidence reflects this that they can be really highly effective at reducing pain and disability associated with osteoarthritis. I don't think that's common knowledge unfortunately. And it's just not passed down through health professionals either. So unfortunately, the state of affairs at the moment is that people kind of have to figure that out on their own and be really open to trying these things even though they're harder. Yeah, I'd really encourage everyone to give it a go and find a really good physio to help coach you through that. That would be my main tip I think. What about you Christian?

Christian

I'd probably just echo exactly what you've said. I think finding a good physio that can actually support you and guide you through the program and or guide you through your journey of self-management and understanding the condition and exercise is the most important. So I think you hit the nail on the head. All right. Thanks very much for your time today, Felicity. It's been really great chatting.

Felicity

Thank you very much for the interview.

Outro

That was Dr Christian Barton musculoskeletal physiotherapist, postdoctoral research fellow and communications manager at La Trobe University's Sport and Exercise Medicine Research Centre and Dr Felicity Braithwaite, physiotherapist and early career post-doctoral fellow with the Body and Mind Research Group at the University of South Australia. You've been listening to another episode of Conference Conversations brought to you by the Physiotherapy Research Foundation and Pain Away Platinum and Content sponsor of the PRF. Thanks for listening and make sure you catch the next episode in a Conference Conversations podcast series.