Vitality Unleashed: The Functional Medicine Podcast

When patients seek alternatives: What stem cell therapy for knee pain is really like

Dr. Kumar from LifeWellMD.com Season 1 Episode 94

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Navigating chronic knee pain from osteoarthritis drives millions to seek solutions beyond conventional treatments. When patients turn to innovative approaches like stem cell therapy, they embark on a journey filled with hope, uncertainty, and personal discovery that extends far beyond the clinical outcomes.

Drawing from groundbreaking qualitative research, we reveal the stark contrast between what patients expect from stem cell treatment for knee osteoarthritis and what they actually experience afterward. The findings challenge our understanding of treatment success and patient satisfaction in profound ways. Most surprisingly, many patients report satisfaction with their treatment experience even when their pain relief falls short of expectations – suggesting that value extends beyond mere symptom improvement.

Before treatment, patients demonstrate remarkable proactivity, conducting extensive research and actively participating in their healthcare decisions. They approach stem cell therapy with tempered optimism, balancing hope against the known uncertainty. After treatment, many face unexpectedly intense side effects despite being informed about potential swelling and pain. "My whole leg blew up," recounted one participant, highlighting the gap between intellectual understanding and lived experience.

Perhaps most fascinating is the enduring hope that characterizes the patient journey. Even twelve months post-treatment, many continue to believe further improvement lies ahead – challenging conventional clinical timeframes. This persistence reveals how deeply personal the healing journey becomes, transcending objective measures of success.

For anyone contemplating alternative treatments for knee pain, caring for someone who is, or simply interested in the human side of emerging therapies, these insights illuminate the complex interplay between expectations, experience, and satisfaction. The question remains: where does the treatment end and the human experience begin? Listen now to understand the full spectrum of what patients navigate when pursuing innovative solutions for chronic pain.

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Speaker 1:

Okay, let's dive in. Today we're tackling something really important chronic knee pain from osteoarthritis.

Speaker 2:

Yeah, it affects so many people.

Speaker 1:

But we're going beyond just the medical side. We want to explore what it's actually like for patients who are thinking about and then getting a novel treatment.

Speaker 2:

Really getting into the human experience. Exactly, really getting into the human experience.

Speaker 1:

Exactly so. If you're dealing with knee pain yourself, or maybe looking at different options, or just curious about what patients go through with newer therapies, this deep dive is definitely for you.

Speaker 2:

And we're focusing specifically on stem cell therapy for knee osteoarthritis. We want to unpack what patients expect going in versus what they actually experience afterwards.

Speaker 1:

Because osteoarthritis I mean it's so widespread often really debilitating.

Speaker 2:

For sure. And the usual paths pain meds, pt, maybe even a full knee replacement they all have their limitations right or potential downsides people worry about.

Speaker 1:

Which is why these alternative approaches get so much attention, especially ones like stem cell therapy, that are aiming to potentially modify the disease itself, not just mask the symptoms.

Speaker 2:

Right, and that's a key difference. Now most of the research has been on the science, the cells. Does it work clinically, which is crucial, obviously?

Speaker 1:

Of course.

Speaker 2:

But there hasn't been as much focus on the patient's actual journey. You know what are their hopes, what are they worried about, what's the day-to-day reality?

Speaker 1:

Which makes our source material for today really valuable. We're drawing from a qualitative study done in Australia and it specifically looked at the perspectives of patients getting this therapy for knee OA. It's one of the first studies to really dig deep into that point of view.

Speaker 2:

So our mission for this deep dive is pretty straightforward Use this research to understand the gap or the connection between patient expectations before treatment and their actual experiences a year down the line.

Speaker 1:

Okay, great, so let's start with the source itself. What kind of study are we talking about? Who did they actually speak to?

Speaker 2:

Sure. So it was a qualitative study. That means they weren't crunching big numbers. They were aiming for rich, detailed stories, understanding people's perspectives in depth.

Speaker 1:

More about the why and how.

Speaker 2:

Exactly. They use semi-structured interviews think guided conversations, not rigid surveys with two groups of patients in Australia dealing with knee osteoarthritis and undergoing stem cell therapy.

Speaker 1:

Okay, two groups Group one.

Speaker 2:

Group one was the expectations group 15 people and the key thing is they interviewed them before any treatment started. They'd agreed to it but hadn't had the cells yet.

Speaker 1:

Ah, so capturing that pre-treatment mindset makes sense.

Speaker 2:

Yep, and then group two was the experiences group.

Speaker 1:

Also 15 people.

Speaker 2:

Also 15,? Yes, but these folks were interviewed 12 months after their first stem cell treatment.

Speaker 1:

A full year later. Okay, Right.

Speaker 2:

So that gives enough time to see you know what the reality looked like after living with it for a while. The process often involved getting stem cells from fat tissue lipo harvest. It's called, then injections into the knee, sometimes more than one.

Speaker 1:

Got it. So two distinct snapshots before and after. Let's dig into that. Before picture. First, the expectations group. What were they thinking going into this? What were the main themes?

Speaker 2:

The researchers pulled out three main themes from those pre-treatment interviews, and the first one really reflects the nature of seeking out this kind of newer therapy Patients expected to be really actively involved. They felt they had to take ownership.

Speaker 1:

Actively involved. What did that look like for them? More than just showing up for appointments, oh yeah.

Speaker 2:

Much more. B-stem cell therapy isn't, you know, the standard first-line treatment everywhere? Yet Many felt they had to drive the process themselves. They were doing a lot of their own research. Like felt they had to drive the process themselves. They were doing a lot of their own research.

Speaker 1:

Like online talking to people.

Speaker 2:

Exactly Online deep dives, reading articles, maybe even looking at clinics overseas. Sometimes they weren't just passively receiving care, they were actively seeking this specific option.

Speaker 1:

That totally tracks. If your doctor doesn't immediately suggest it, you become your own investigator, right.

Speaker 2:

Precisely and, interestingly, they generally felt pretty well informed by the time they committed, both from their own research and from the clinic staff explaining things.

Speaker 1:

So they felt empowered by the information.

Speaker 2:

It seems so. The study mentioned examples of participants feeling comfortable just calling the clinic with questions. It's to just a sense of partnership, not just being told what to do.

Speaker 1:

Okay, so expectation one I need to be engaged, I expect to be engaged, I'm driving this. What was the second big expectation?

Speaker 2:

Well, no surprise here. The second theme was that the treatment would actually improve their symptoms. That was the main driver.

Speaker 1:

And what kind of improvements were top of mind? Less pain, moving better.

Speaker 2:

Yes, exactly that. Less pain was huge, obviously being able to move more freely.

Speaker 1:

Just general comfort in the knee. Getting back to activities Now. Was this like a certainty for them this will fix my knee, or was it more nuanced?

Speaker 2:

That's a really important point. It was often more nuanced. For many, it came across more as a strong hope rather than a firm, guaranteed expectation. Oh, ok, they seemed aware it wasn't a magic bullet, that it didn't work for absolutely everyone. The study mentions this figure like a 70 percent success rate. Sometimes came up in discussions.

Speaker 1:

And patients mentioned that.

Speaker 2:

Yeah, they echoed that uncertainty.

Speaker 1:

Yeah.

Speaker 2:

One person was quoted saying something like I'm hopeful my body will be in one of the 70 percent that grows cartilage. Another specifically said I'm expecting. I'm hoping you know hope rather than expect that it would keep their knee going for years.

Speaker 1:

That difference between expecting and hoping. That says a lot about going into something that isn't a guaranteed fix. Very insightful. What about the third theme from this group?

Speaker 2:

The third theme was their assessment of risk versus reward. Basically, they felt the potential benefits outweighed the perceived risks.

Speaker 1:

So they were definitely thinking about the risks involved. It wasn't all positive thinking.

Speaker 2:

Oh, absolutely. They considered the general risks of any medical procedure, but also specific ones like what if it just doesn't work? That's a big one in efficacy.

Speaker 1:

And the cost. I imagine these aren't always cheap.

Speaker 2:

Exactly the financial investment was a factor they weighed, and potential, though usually low, risk of infection.

Speaker 1:

But despite those potential downsides, the potential upsides still won out for them.

Speaker 2:

It did in their calculation. The chance to reduce pain, improve mobility and maybe crucially, avoid or delay major surgery like a knee replacement that potential payoff seemed worth the gamble.

Speaker 1:

They compared it directly to knee replacement.

Speaker 2:

Often yes, and in that comparison they sometimes saw knee replacement as having its own set of significant risks maybe not getting full range of motion back, longer recovery, surgical complications. One participant mentioned that specifically, saying you don't seem to get the full range back after replacement. Another just saw stem cells as a less intrusive solution.

Speaker 1:

So it sounds like a very conscious weighing of options. They looked at the pros, the cons, the uncertainties and decided this path. This novel therapy was the preferred risk, especially versus major surgery.

Speaker 2:

That's really the essence of it. You know, like one person put it, it could go really well or it could not work at all, but that's a risk I'm willing to take.

Speaker 1:

That's powerful. Ok, so that paints a clear picture of the mindset going in proactive, hopeful for relief and seeing the potential benefits as worth the known risks and uncertainties. Now let's flip the coin. The Experiences Group interviewed a year after treatment. What was their reality?

Speaker 2:

Okay, shifting to the Experiences Group, again three main themes popped up, and the first one deals directly with the immediate aftermath, the symptoms they experienced right after the treatment.

Speaker 1:

The side effects, basically Post-injection stuff. Was that a big part of their memory?

Speaker 2:

It definitely was. Swelling and pain after the injections were commonly reported and generally they had been told this might happen. The clinics informed them.

Speaker 1:

Okay, so they knew it was a possibility, but I sense a but coming.

Speaker 2:

Exactly. Here's where it gets interesting. Even though they knew swelling, for instance, could happen, many were genuinely surprised by the reality of it, maybe where it swelled up, or how severe it got or how long it actually lasted.

Speaker 1:

Ah, so the information didn't quite prepare them for the lived experience.

Speaker 2:

Precisely Knowing about a potential side effect on paper is one thing, dealing with your whole leg blowing up is quite another.

Speaker 1:

Can you share any examples from this study? What did people actually say?

Speaker 2:

The descriptions are quite vivid. One person talked about their ankle swelling up major, being quite big, painful to kneel on and lasting for about a week or two.

Speaker 1:

Wow, okay, wow.

Speaker 2:

Okay. Another said their whole leg blew up, making the knee stiff, and described it as really awkward, impacting basic things like using the toilet. It wasn't just minor soreness for everyone.

Speaker 1:

Yeah, that sounds pretty disruptive. So the takeaway isn't that they weren't informed, but that the intensity or impact of those symptoms could still catch them off guard.

Speaker 2:

That's a great way to put it. Information doesn't always translate into experiential preparedness. The study also mentioned a small subgroup just 5% who'd had microfracture surgery before the stem cell injection.

Speaker 1:

Okay, what's that?

Speaker 2:

It's a procedure to try and stimulate cartilage growth by making tiny holes in the bone. For those few patients, their recovery time post-injection was longer and it caused more disruption to their lives, things like child care or keeping up with rehab.

Speaker 1:

Ray, adding another layer for some. Okay, understood what was the second major theme from the experiences group, looking back after a year.

Speaker 2:

The second theme was all about their satisfaction with the treatment overall.

Speaker 1:

The big question so a year out, how did they feel, was it worth it? The big question so a year out, how did they feel, was it worth it?

Speaker 2:

Broadly speaking, yes, most participants reported general satisfaction. A good number said they'd do it again or that they actively recommend it to other people.

Speaker 1:

Really so positive feedback overall.

Speaker 2:

Yeah.

Speaker 1:

You hear things in the quotes like I reckon it was good, I reckon it was successful and that's all I do is recommend it. Was that satisfaction mostly tied to seeing big improvements like less pain, better function?

Speaker 2:

Often, yes, there was definitely a strong link. People who felt satisfied frequently pointed to specific positive outcomes. You know, being able to run again pain-free when they couldn't before.

Speaker 1:

Concrete results.

Speaker 2:

Right, or someone mentioned getting back to high-impact dancing Things that clearly improved their quality of life. Those tangible benefits were powerful motivators for satisfaction.

Speaker 1:

You can really feel the relief in those examples getting back to something you love.

Speaker 2:

Absolutely, but and this is probably the most fascinating finding in this theme, maybe in the whole study- Uh-oh, what is it? Some participants reported being satisfied with the process, the clinic, the care they received, even if they didn't actually get the symptom relief they were hoping for.

Speaker 1:

Wait, really Satisfied, even if their knee didn't feel much better.

Speaker 2:

Exactly, it seems counterintuitive, right? The study authors really highlighted this.

Speaker 1:

How did they display that?

Speaker 2:

Well, one participant basically said the job they did was excellent, the follow-up and all. I just didn't get the result. I was hoping for no real improvement, but they still value the care experience Wow. So the huge takeaway there is that patient satisfaction isn't just about the clinical numbers or the final outcome on an x-ray. It's much more holistic.

Speaker 1:

The quality of care, the communication, feeling supported. That matters hugely.

Speaker 2:

It really does, especially perhaps with these newer therapies where outcomes might be less certain, that overall experience counts for a lot.

Speaker 1:

That's a massive insight for anyone in health care. Okay, so satisfaction is complex. What was the third and final theme from the experiences group?

Speaker 2:

The third theme was this ongoing anticipation of further improvement. Even a full year after the treatment, many participants still held on to a belief, or at least a hope, that things would continue to get better.

Speaker 1:

So they didn't see the 12-month mark as the final result.

Speaker 2:

Not necessarily In their minds. The healing or regeneration process might still be ongoing. They hadn't given up hope for more progress.

Speaker 1:

Is there any basis for that, or is it just wishful thinking?

Speaker 2:

Well, interestingly, the study points out that this isn't entirely unfounded. There is some evidence suggesting that improvements from stem cell therapy can sometimes continue for several years post-treatment.

Speaker 1:

Ah, okay, so that belief has some support.

Speaker 2:

It seems so, and you saw this reflected in what participants said. They talked about needing more time or hoping it will continue to improve. Some even mentioned hearing about others who were slow burners and saw results emerge over a longer period.

Speaker 1:

That persistent hope even a year later. It really speaks to the narrative around these therapies, maybe the potential for ongoing change.

Speaker 2:

It absolutely does, and it connects right back to those initial hopes they carried into the treatment that we talked about earlier.

Speaker 1:

Okay, so let's try and tie these two perspectives together. Now we have the expectations before, the experiences after. What does the study suggest about how those two relate?

Speaker 2:

Well, the discussion part of the study really emphasizes how those initial patient expectations can profoundly shape their whole experience and maybe even how they interpret the outcome later on.

Speaker 1:

Right, and it brings back that distinction you made earlier.

Speaker 2:

Exactly Between expectation believing something will happen and hope wanting it to happen, but knowing it might not. That nuance seems really important here.

Speaker 1:

And did the study find that expectations generally lined up neatly with the experiences?

Speaker 2:

Not always no, and this study's findings actually echo other research in this area. It seems patients sometimes overestimate the potential benefits or maybe more significantly underestimate the potential downsides, like the severity of those post-injection symptoms we discussed compared to what they actually go through.

Speaker 1:

Which really highlights the need for what Better communication from clinics.

Speaker 2:

Absolutely Crystal clear, realistic, evidence-based information up front. Managing those expectations effectively is crucial, helping patients form a picture that's as accurate as possible.

Speaker 1:

Because, like we saw with that surprising satisfaction, finding a mismatch between expectation and reality can really affect the whole experience, regardless of the objective clinical result.

Speaker 2:

Precisely. Satisfaction isn't just did my pain score go down, it's tied up with the entire process. The quality of interactions, feeling informed, feeling listened to. All these factors are critical, especially when you're dealing with something new and maybe a bit uncertain like stem cell therapy. Understanding all those layers is key to truly patient-centered care.

Speaker 1:

It really puts the person back into the patient data, doesn't it? So, thinking about the study itself, what were its main strengths and weaknesses?

Speaker 2:

Well, its biggest strength is definitely giving us this first really valuable qualitative look at the patient side of the story for this specific treatment. Getting those direct voices, those personal narratives, is incredibly insightful.

Speaker 1:

Yeah, you can't get that from numbers alone.

Speaker 2:

Exactly, and the limitation.

Speaker 1:

Adjusting generalizability.

Speaker 2:

You got it, it's a qualitative study, remember relatively small sample 30 people total from clinics in Australia. So you can't take these findings and say this is exactly what every stem cell patient everywhere experiences or expects.

Speaker 1:

It's a snapshot, not the whole picture.

Speaker 2:

Right. It's a really important starting point, raising key themes that definitely need more investigation, probably in larger, more diverse groups of patients and settings.

Speaker 1:

Well, this deep dive into how patients see stem cell therapy for knee osteoarthritis, their hopes going in, their reality coming out, it's been incredibly revealing, I think.

Speaker 2:

It really highlights the complexity of the patient journey, doesn't it? It starts way before the clinic, with their own research and hopes. It includes the nitty gritty of treatment, side effects which can hit harder than expected. And then there's satisfaction, which is about so much more than just symptom relief. It's tied to the care, the communication, and often there's that enduring hope for continued improvement long after.

Speaker 1:

It just hammers home how vital clear communication, realistic expectations and genuinely patient-focused care are, especially when navigating these newer treatment frontiers.

Speaker 2:

Understanding these perspectives is just fundamental if we want to support patients properly through these journeys.

Speaker 1:

Absolutely so. Reflecting on everything we've covered, how expectations, color experience, how satisfaction is multifaceted and how hope can persist, it really leaves you with a thought, doesn't it? How much of a patient's overall satisfaction, their perceived success, with a therapy like this is purely done with the biological changes from the treatment itself, and how much is interwoven with their mindset going in the quality of the care relationship and that powerful ongoing hope for a better future.

Speaker 2:

That's a fascinating question to chew on.

Speaker 1:

Definitely something for you, the listener, to consider, whether you're thinking about these therapies yourself or just learning more about them. Where does the treatment end and the human experience begin?