Quality of life in Parkinson’s disease

Today, we're going to be talking about her recent article in the Movement Disorders Clinical Practice journal entitled "Defining Quality of Life: The Perspective of People Living with Parkinson's Disease." Thank you so much for joining us today.

Dr. Connie Marras: My pleasure. Thank you for having me.

Dr. Sara Schaefer: All right. You know, what struck me first about this paper is that it's defining something that we talk about all the time. We talk about it in practice, in clinical practice. We talk about it in the research space. Your work sets out to define what quality [00:01:00] of life means to persons with Parkinson's disease, and as I mentioned, there are already quality of life scales that are used in research and in the clinical space. Why did your team think it was important to ask this question now?

Dr. Connie Marras: Yeah. So your comments reflect the fact that, although we use the term all the time and we think we know what it means when you really start to look at how scales seek to measure quality of life, and also how the term is used in the literature. It's used to define a concept of a varying scope depending on the context.

And the scales that we use are generally focusing on the determinants of quality of life, and not really the essence or the fundamental nature of the thing itself. And so it was really that observation [00:02:00] that made me interested in understanding better what quality of life is.

And when I looked at definitions of quality of life in the literature it struck me that we had never-- I had not come across, at least, work that had asked the people with lived experience what they thought about this. So it was those factors that motivated this research.

Dr. Sara Schaefer: And when you say determinants of quality of life being in the scales, can you give me some examples?

Dr. Connie Marras: Scales of quality of life in Parkinson's disease, we often refer to them as health-related quality of life, often are divided into domains such as motor, non-motor, emotional. So for example there might be a question of about how well one can walk or how much there is, how severe somebody's tremor is, for example.

And so those would be examples of things that can be determinants of one's quality of life in a small [00:03:00] part but don't capture quality of life per se.

Dr. Sara Schaefer: All right. So how did you seek to figure this out? Tell us about the methods of your study and I'd love to hear about why your team chose a qualitative approach to collecting this data.

Dr. Connie Marras: Sure. Well, maybe I'll start with the last piece first is, why a qualitative approach? So really, there's no right or wrong answer to this, in terms of, what is quality of life? It's very opinion-based. Our aim was a conceptual understanding. And those kinds of approaches lend themselves to qualitative research.

And really, we were starting from a point of a lack of prior knowledge. And so we were seeking to find the opinions of people with lived experience to inform perhaps later quantitative research on this, with the overall goal actually of the big project to identify important attributes of scales that are designed to measure quality of life. [00:04:00] But from the point of view of the people with lived experience.

To do this, we started with asking these individuals, so a group of people with Parkinson's disease, how they would define quality of life? And we asked them, we told them we were going to ask them this in the context of an interview and gave them a few days to think about it. And then they brought those thoughts to the interview.

And we recorded all of their responses and then took a qualitative approach to that analysis, initially coding categories of information that they were giving to us, and then following that by a more thematic analysis. That then we boiled down into a framework circulated that to a working group, which consisted of people living with Parkinson's disease and also clinicians, movement disorder specialists, and allied health professionals.

And each [00:05:00] of those individuals separately gave us feedback on the framework, which we iteratively incorporated and then fed back to them for further refinement. And so it was an iterative process involving both people with and without Parkinson's disease.

Dr. Sara Schaefer: That's such an interesting methodology, taking the data that you collect and then going to a group not just of those patients but clinicians as well to try to operationalize it, a little bit more.

Dr. Connie Marras: Yes, and hopefully make it-- put it into a language that speaks to both parties, right? Because I think there are stakeholders on both sides in this that will help to inform both research and clinical care.

Dr. Sara Schaefer: And what did you find? And were there any surprises in your findings, for you?

Dr. Connie Marras: Yes. So we found, three layers of information is how I thought about it, that lead to the core, the seed of what is actually quality of [00:06:00] life. And you'll see there's a figure in the paper where the outer theme sort of ways to create positive feelings, leading to the actual positive feelings that contribute to good quality of life.

And then in the inner core is that quality of life, which is the mental state of consisting of positive feelings. So I guess it stressed that quality of life is intangible. A state that is influenced by many things that are more tangible, but those are not quality of life in and of themselves.

But one of the surprising things to me, which maybe shouldn't have been, given my knowledge of the literature and the scales that we use, is that most of our participants actually talked about the determinants of quality of life rather than what is quality of life itself. And so it goes to show that this is a hard thing to actually describe [00:07:00] in and of itself.

Less than half of our participants actually spoke directly about health definitions, which was also important, despite the fact that they were people with a chronic neurodegenerative condition. But they talked mostly about abilities and doing things that give them joy. And then thirdly, it was very interesting to me that a group of people who had more advanced Parkinson's disease in what you might call moderate to severe categories, and they were the only people who talked about ideas like independence or acceptance of their situation.

Whereas the more mildly affected individuals, never raised those ideas. They were the only group who talked about wanting a lack of stigmatization, dignity, respect, and they talked a lot about the ability to do things and wanting to retain those. But these [00:08:00] discrepancies also made us think about the fact that the way one conceptualizes quality of life and those determinants may shift over time.

Although ours was a cross-sectional, not a longitudinal study, so that remains to be evaluated. But still I think has implications perhaps for measurement in that not only are quality of life determinants variable across individuals, so the people in our study were telling us each of quite different things in many instances about what quality of life is to them.

But it also likely can change within an individual over the course of the disease, and that obviously could have implications for measurement.

Dr. Sara Schaefer: Yeah, reading the responses, I was thinking about how if I were looking at this qualitative data, not that I have all the data, but how I would divvy things up, right? And thinking about the state of things, right? The healthy versus unhealthy, Parkinson's [00:09:00] versus non-Parkinson's, or pre versus post-Parkinson's.

And then what you can or cannot do because of the state of things. Those activities that are important to them, how independent are you, how normal do you consider yourself? That "normalcy" came up a couple of times. And then there's the reaction to the state of things and what you can or cannot do. Are you still finding joy?

Are you still finding fulfillment? And then there was that sort of external piece, stigma, the judgment, being a burden or not being a burden on others, that kind of stuff. And I guess, from what you said at the beginning, it seems like a lot of our scales only get at the first or maybe the first and second of those things, and not necessarily the latter parts.

But it left me feeling amorphous about the whole thing. How do you reconcile all of this into a single concept? And should we even try? Do you think that's even [00:10:00] possible?

Dr. Connie Marras: I do think that quality of life can be boiled down into a single concept, and that all of the information that our participants were giving us were about determinants of this single concept. They were clearly telling us, even though they say, quality of life is my ability to do the hobbies that I really enjoy. There is the implication that they have something that they do that leads to joy, which then determines their quality of life, right? And some other person might put it in different terms, finding fulfillment through their hobbies. But again, it's leading to that mental state that is a positive feeling that is quality of life, was the message that we took away from our participants.

And I think it's unifiable into that final mental state, but what varies is what determines that across individuals. And [00:11:00] so I think the challenge in our measurement of quality of is to try to measure it directly by asking people about how positively they feel, right?

Or you could put it as quality of life, if you like, in a sort of a single question. But if you try to implement that in clinical research, depending on what you're trying to achieve in, say we're talking about a clinical trial where we want to use quality of life as a secondary outcome measure, then we're going to run into the problem that there are so many determinants of that state of positive feelings that are we going to get a responsive measure based on our intervention?

That may be quite unlikely. And so we have to potentially pick a few determinants of quality of life to focus on, depending on the context of use. And so I think therein lies the challenge of this, that it's a single [00:12:00] final concept, but it has a huge number of determinants that vary across individuals, and we have to find a measurement solution that accounts for that.

Dr. Sara Schaefer: So how do you think your work should inform the scales that we use in research? I know that's a sort of next steps question, future studies question, but do you have any initial thoughts?

Dr. Connie Marras: I do for sure. I think that we do need to be clear what we're measuring, That we're not measuring quality of life per se, but we're measuring its determinants probably in most scales. We have to, as I mentioned, we have to try to account for this individualistic nature of what determines quality of life.

And we heard in other parts of our research project from people living with Parkinson's disease about how we can do that with trying to focus not only on the presence or absence of, or the frequency or [00:13:00] severity of symptoms and experiences, but also what the impact is on the individual.

And those are different questions and require different response options but can be incorporated. We also heard from them that these enhancers of quality of life, which dominated the responses of our participants are rarely in the scales and need to be incorporated as well. Such as, having respect, having support from family and caregivers.

Dr. Sara Schaefer: How do you think your work should impact the clinical care of people with Parkinson's disease?

Dr. Connie Marras: I think that as clinicians we often focus a lot on the physical symptoms. Usually our care is dominated by trying to address motor issues, right? That we can impact with the medications and the non-pharmacological interventions that we have. But I think that [00:14:00] what we don't do so well is try to support people with Parkinson's disease in their ability to do things that give them joy. And in order to do that, I think spending some time early on in your relationship with patients to find out what it is that gives them joy is valuable and can inform your later conversations. Probably will very much help also your building relationship with your patient, and help us to focus our interventions on those things that will really matter to them.

So if I see that my patient has a very significant rest tremor I may feel compelled to alter their medications to try to address that, but understanding what the impact of that is on them and whether or not it really matters, and maybe it's not the most important thing to them I think is very important.

And, the activities that they may want to attain in order to really give them some a sense enjoyment in their day also could be a [00:15:00] focus of your treatment goals for the person. Those are the things that I think could shift the way we approach our conversations with our patients.

Dr. Sara Schaefer: I agree 100%. I try to include all of that stuff in my first visit with a patient with Parkinson's and put it in the social history so it's there in perpetuity for me to refer back to, you know, their love of pickleball or whatever it may be.

Dr. Connie Marras: Right.

Dr. Sara Schaefer: Do you think there's a message here for our patients any patients that might be listening to this podcast that you want them to take away?

Dr. Connie Marras: Yes. I think that if they want to get the most out of their visits to their healthcare professional, they can direct the focus on those things that are most detracting from their quality of life, and don't let the healthcare professional get derailed into talking a lot about things that are not important.

So it's ultimately it's their care that's important. And don't let the [00:16:00] healthcare professionals drive the bus so to speak. Setting goals that would contribute to their fulfillment in life would be helpful. And, share these goals with their healthcare professional so that they can help you achieve that.

I think that'll help the whole interaction really work as a team and get the best results.

Dr. Sara Schaefer: Great advice all around. Thank you for joining us. Do you have anything else that you wanna add before we close out?

Dr. Connie Marras: No, only to thank you for your interest in the paper and I really hope that this work can help us to better measure quality of life in a way that's really meaningful to our patients and i-improve the research that we do and make it more relevant.

Dr. Sara Schaefer: Yeah, I love how you're just getting back to the people we're doing this all for. Congratulations on your paper.

Dr. Connie Marras: Thank you so much. [00:17:00]