Elaine Kingwell's guest appearances

Elaine Kingwell

Multiple Sclerosis Discovery: The Podcast of the MS Discovery Forum

Alan Alda

Tim Kennedy

Richard Cohen

David Baker

Jeffrey Cohen

Michael Levy

Alan Thompson

David Holtzman

Oscar Fernandez

Paul Matthews

Raj Kapoor

Adam Kaplin

Bruce Cree

Lilyana Amezcua

Daniel Hartung

OwlTail

[intro music] Host – Dan Keller Hello, and welcome to Episode Seventy-five of Multiple SclerosisDiscovery, the podcast of the MS Discovery Forum. I’m DanKeller. Today's interview features Elaine Kingwell, a research associateat the University of British Columbia in Canada. She and hercolleagues have gathered and recently published incidence andprevalence figures for people with MS in the province. I spoke withDr. Kingwell at the ECTRIMS meeting in Barcelona in October to findout the reason for the study and to explore the changing trends shefound and their significance. Interviewer – Dan Keller What prompted you to do this study? Interviewee – Elaine Kingwell In British Columbia, we know that Canada has got a highincidence and prevalence rate of MS, but we don't actually have thenumbers, so we've been doing a lot of research on MS in BritishColumbia for many, many years. But we don't have the incidencenumbers for BC, and also the prevalence is out of date – theestimates that we have – so it really was time to get an idea onhow many people we have in BC. And also, we wanted to look atchange over time, and we have access to some amazing administrativedatabases in BC and also had some algorithms that we could use thathave been validated, so that we could identify people with MS inthe databases. MSDF Why are these numbers important? Dr. Kingwell It's important for lots of different reasons. For instance, it'simportant to monitor trends over time. We're able to do that in BC,because we have data going back several years. And so, it'simportant to see if populations are changing, so that we can getsome clues about whether environmental factors might be changing.And also, for the prevalence estimates, it's important to know howmany people have MS in the province, so that healthcare planningcan be done wisely and resources. MSDF How do you go about looking at this? Dr. Kingwell So as I mentioned, we did use the health administrativedatabases in BC, which are big databases that collect data on thewhole population. A number of different databases were combined,including hospital admissions and physician visits. It's all claimsdata, so that when someone goes to see their physician, a billingclaim gets put in with their diagnosis. So we use these codes toidentify people with MS. And we basically estimated the number ofpeople with MS [over] several years – one year at a time – so thatwe could look at change over time for prevalence. And we alsoestimated the incidence, the number of new cases each year,starting in '96 right up until 2008. MSDF What did you find in terms of incidence and prevalence? Dr. Kingwell Well we found the incidence and prevalence are both high. Theincidence was around 7.8 per 100,000 per year, and the prevalencewas around 180 to 200 per 100,000 in 2008. So they were both high,what is relatively high compared to other places in the world andsimilar to rates that have been found in Europe, in NorthernEurope, and other parts of Canada, as well. MSDF And the prevalence is increasing over time? Dr. Kingwell Yeah, we found that it increased quite significantly by about4.7% per year, so a big increase. It also shifted in thepredominant age of people, so that the peak prevalence age wasaround in the mid-40s in the 1990s, and it's now shifted up intothe mid-50s. So the population of people with MS is getting olderin BC. We also saw with incidence … quite differently, theincidence was not changing over time, so it stayed relativelystable; it did fluctuate as incidence always does. But over time,on average, it stayed the same. MSDF Are those two pieces combined—increasing prevalence and olderage—good news? Dr. Kingwell I don't know if any of it's good news. It means that we have anolder population that are probably requiring more care, as they getolder, for the MS, as well as, of course, comorbidities they mayhave. So, it's certainly something that healthcare planners need tobe aware of. And we have an aging population, in general, inCanada, as we do in other parts of the world, but we have a lotmore people with MS at an older age. MSDF But doesn't that mean they're surviving longer? Dr. Kingwell That's the good news part, yeah. And it does mean that, becausewe're not seeing a change in incidence, the most likely explanationis that the survival is better. People are surviving longer withMS. We're seeing an increase in survival for the whole population,but we're also seeing an increase in survival for people withMS. MSDF What about the gender ratio in terms of prevalence but also interms of survival? Dr. Kingwell We're seeing a gradual increase in the number of women relativeto men in prevalence. That's most likely due to the fact that womendo survive longer than men, on average, of course that's highlyvariable. But on average, they survive longer than men. And so, ifyou've got an aging population and three-quarters of the peoplewith MS are women, then you're going to find the number of womenare increasing. MSDF How did the socioeconomic status affect the findings? Dr. Kingwell Yeah, so we did actually look at socioeconomic status. It wasmeasured at the neighborhood level, so not the individual level.It's linked into the databases by postal code. We did find thatthere were more people with MS in the higher levels ofsocioeconomic status, but the absolute differences were not thatgreat. And, when we looked at this, it was not linked or adjustedfor other factors. So there's so many things that can be attachedto socioeconomic status and, of course, age is one of them, andyour age is greatly related to whether you have MS or not. And so,there are other possible explanations, so we don't put a lot ofemphasis on that. When we look at socioeconomic status, we reallythink that you need to design a study specifically to look atthat. MSDF Could you look at the use of disease-modifying drugs accordingto socioeconomic status? Dr. Kingwell We could, and we have actually looked at that in other studies.Again, as a kind of an adjustment factor or something to bear inmind when we're looking at lots of variables at once, we findthere's the same kind of trend that people in the higher levelstend to be on drug more often. But again, the absolute numbers arevery small, and it could totally be related to age or other factorsthat are not adjusted in. MSDF Were the data there to be able to look at early initiation ofdisease-modifying drugs and any effects it may have had? Dr. Kingwell Well for this particular study – in the incidence and prevalencestudy – we looked at just whether people had ever had drug. Welooked at the incident population to see if they'd had it in thelast three years or so—that's the three years from their firstclaim, which is close to when they're first diagnosed or recognizedas having MS. And for the prevalent population, we looked atwhether they'd ever had MS. So we were able to tell that about athird of the cases had had a disease-modifying drug. And this studydid start way back in the early 90s and then mid-90s for theincidence cases. So, you would expect it to be a lower rate becausethe drugs were just starting to become available in the mid-90s. Sowe didn't look at the actual start date of the drug for thisparticular study; we certainly are able to look at that because wehave access to the databases to look at those kinds of questions,and we are looking at those kinds of questions in otherstudies. MSDF Can you put your findings in context to other studies at otherlatitudes, locals, healthcare systems? Dr. Kingwell Yeah, that's a complicated question. Certainly as studies aresimilar to the findings from some other studies. In particular, inCanada, there's been some very similar studies done in Manitoba andNova Scotia where we've used exactly the same algorithm that wasvalidated in those provinces led by Dr. Ruth Ann Marrie from theUniversity of Manitoba. So, we found that prevalence and incidenceestimates are very similar, and the findings and the change overtime are also very comparable. When we look at some of the othercountries, there are some similar findings in other places, butthey vary a lot. When it comes to latitude, of course, we didn'thave a big latitude gradient in our study; we were just looking inBC, and most of the people in BC live in one area around they'reconcentrated in the south of the province. But certainly there's alot of variation in findings. But in order to get a look at thechange over time, you really need to look within the samepopulation on more than one occasion rather than comparing betweenpopulations over time. It's really difficult to make thatcomparison. MSDF Do you have a particularly good situation in BC in that you canlink databases of diagnostic codes, physician visits,hospitalizations, pharmacy benefits, things like that that may notexist in other places with a less coordinated system? Dr. Kingwell Yeah, definitely. We are in a situation where we have access tosome amazing databases. Many of the provinces in Canada have thesame or similar databases, so it is like that. We also have thegreat situation that we have a clinical database in BC too wherewe've been collecting data on MS patients over a very long periodof time. And we can link that data into the administrativedatabases, so we have the depth of the clinical data that we canlink in the breadth of the administrative data, which has reallyput us in a very strong position to look at these long-termfollowup studies. MSDF Is it pretty smooth to be able to delve into these databases, ordo you have any regulatory barriers like, in the US, we have allthese HIPAA things. Do you have a problem with de-identifying oranything like that? Dr. Kingwell It's certainly not smooth. It can actually take us several yearsto access this data. It's a long process. It's a lot of paperworkfor all of the reasons that…or some of the reasons you justmentioned. The data is actually all handled through…when we're atUBC, it's handled through Population Data BC, which is kind of thecenter between the Ministry of Health and the databases. And theystrip all the identifiers off, so that by the time we receive anydata … we, of course, have to go through a lot of privacy concernsand justification before we get any data sets. All the names andthe numbers are removed, so that we don't know who anybody is inour database. Even when we're linking our clinical data, of course,everything is completely anonymized by the time we work on anythinglike that. MSDF What kind of conclusions can you draw from what you've found sofar? Dr. Kingwell One of the main conclusions, I think, is that the incidentpopulation has leveled off, apparently, in BC. We started measuringincidence in 1996, and it's possible there were changes inincidence before that, but we can say that in the last 13 years –up to 2008 – that the number of cases has leveled off, which isgood news it's not increasing. We also can say that the number ofprevalent cases, on the other hand, is increasing a lot, so thatthe services need to be aware of that that there's going to be ademand on the healthcare system, there already is. And also thatour results are very similar to as seen in other parts of Canadaand comparable. The other main conclusion I would draw is that this study reallyshows how you can utilize these types of databases and reliablealgorithms and ways of identifying people with MS in order tomonitor the number of people and also changes over time. And alsocan give us some information about the people with MS and whatkinds of drugs they're taking because we're linked into thePharmaNet databases, and we can do that too. So there's lots ofquestions we can answer about the population in BritishColumbia. [transition music] MSDF Thank you for listening to Episode Seventy-five of MultipleSclerosis Discovery. This podcast was produced by the MS DiscoveryForum, MSDF, the premier source of independent news and informationon MS research. MSDF’s executive editor is Carol Cruzan Morton.Msdiscovery.org is part of the nonprofit Accelerated Cure Projectfor Multiple Sclerosis. Robert McBurney is our President and CEO,and Hollie Schmidt is Vice President of Scientific Operations. Msdiscovery.org aims to focus attention on what is known and notyet known about the causes of MS and related conditions, theirpathological mechanisms, and potential ways to intervene. Bycommunicating this information in a way that builds bridges amongdifferent disciplines, we hope to open new routes towardsignificant clinical advances. [outro music] We’re interested in your opinions. Please join the discussion onone of our online forums or send comments, criticisms, andsuggestions to editor@msdiscovery.org. For Multiple Sclerosis Discovery, I'm Dan Keller.

[intro music] Host – Dan Keller Hello, and welcome to Episode Seventy-five of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m Dan Keller. Today's interview features Elaine Kingwell, a research associate at the University of British Columbia in Canada. She and her colleagues have gathered and recently published incidence and prevalence figures for people with MS in the province. I spoke with Dr. Kingwell at the ECTRIMS meeting in Barcelona in October to find out the reason for the study and to explore the changing trends she found and their significance. Interviewer – Dan Keller What prompted you to do this study? Interviewee – Elaine Kingwell In British Columbia, we know that Canada has got a high incidence and prevalence rate of MS, but we don't actually have the numbers, so we've been doing a lot of research on MS in British Columbia for many, many years. But we don't have the incidence numbers for BC, and also the prevalence is out of date – the estimates that we have – so it really was time to get an idea on how many people we have in BC. And also, we wanted to look at change over time, and we have access to some amazing administrative databases in BC and also had some algorithms that we could use that have been validated, so that we could identify people with MS in the databases. MSDF Why are these numbers important? Dr. Kingwell It's important for lots of different reasons. For instance, it's important to monitor trends over time. We're able to do that in BC, because we have data going back several years. And so, it's important to see if populations are changing, so that we can get some clues about whether environmental factors might be changing. And also, for the prevalence estimates, it's important to know how many people have MS in the province, so that healthcare planning can be done wisely and resources. MSDF How do you go about looking at this? Dr. Kingwell So as I mentioned, we did use the health administrative databases in BC, which are big databases that collect data on the whole population. A number of different databases were combined, including hospital admissions and physician visits. It's all claims data, so that when someone goes to see their physician, a billing claim gets put in with their diagnosis. So we use these codes to identify people with MS. And we basically estimated the number of people with MS [over] several years – one year at a time – so that we could look at change over time for prevalence. And we also estimated the incidence, the number of new cases each year, starting in '96 right up until 2008. MSDF What did you find in terms of incidence and prevalence? Dr. Kingwell Well we found the incidence and prevalence are both high. The incidence was around 7.8 per 100,000 per year, and the prevalence was around 180 to 200 per 100,000 in 2008. So they were both high, what is relatively high compared to other places in the world and similar to rates that have been found in Europe, in Northern Europe, and other parts of Canada, as well. MSDF And the prevalence is increasing over time? Dr. Kingwell Yeah, we found that it increased quite significantly by about 4.7% per year, so a big increase. It also shifted in the predominant age of people, so that the peak prevalence age was around in the mid-40s in the 1990s, and it's now shifted up into the mid-50s. So the population of people with MS is getting older in BC. We also saw with incidence … quite differently, the incidence was not changing over time, so it stayed relatively stable; it did fluctuate as incidence always does. But over time, on average, it stayed the same. MSDF Are those two pieces combined—increasing prevalence and older age—good news? Dr. Kingwell I don't know if any of it's good news. It means that we have an older population that are probably requiring more care, as they get older, for the MS, as well as, of course, comorbidities they may have. So, it's certainly something that healthcare planners need to be aware of. And we have an aging population, in general, in Canada, as we do in other parts of the world, but we have a lot more people with MS at an older age. MSDF But doesn't that mean they're surviving longer? Dr. Kingwell That's the good news part, yeah. And it does mean that, because we're not seeing a change in incidence, the most likely explanation is that the survival is better. People are surviving longer with MS. We're seeing an increase in survival for the whole population, but we're also seeing an increase in survival for people with MS. MSDF What about the gender ratio in terms of prevalence but also in terms of survival? Dr. Kingwell We're seeing a gradual increase in the number of women relative to men in prevalence. That's most likely due to the fact that women do survive longer than men, on average, of course that's highly variable. But on average, they survive longer than men. And so, if you've got an aging population and three-quarters of the people with MS are women, then you're going to find the number of women are increasing. MSDF How did the socioeconomic status affect the findings? Dr. Kingwell Yeah, so we did actually look at socioeconomic status. It was measured at the neighborhood level, so not the individual level. It's linked into the databases by postal code. We did find that there were more people with MS in the higher levels of socioeconomic status, but the absolute differences were not that great. And, when we looked at this, it was not linked or adjusted for other factors. So there's so many things that can be attached to socioeconomic status and, of course, age is one of them, and your age is greatly related to whether you have MS or not. And so, there are other possible explanations, so we don't put a lot of emphasis on that. When we look at socioeconomic status, we really think that you need to design a study specifically to look at that. MSDF Could you look at the use of disease-modifying drugs according to socioeconomic status? Dr. Kingwell We could, and we have actually looked at that in other studies. Again, as a kind of an adjustment factor or something to bear in mind when we're looking at lots of variables at once, we find there's the same kind of trend that people in the higher levels tend to be on drug more often. But again, the absolute numbers are very small, and it could totally be related to age or other factors that are not adjusted in. MSDF Were the data there to be able to look at early initiation of disease-modifying drugs and any effects it may have had? Dr. Kingwell Well for this particular study – in the incidence and prevalence study – we looked at just whether people had ever had drug. We looked at the incident population to see if they'd had it in the last three years or so—that's the three years from their first claim, which is close to when they're first diagnosed or recognized as having MS. And for the prevalent population, we looked at whether they'd ever had MS. So we were able to tell that about a third of the cases had had a disease-modifying drug. And this study did start way back in the early 90s and then mid-90s for the incidence cases. So, you would expect it to be a lower rate because the drugs were just starting to become available in the mid-90s. So we didn't look at the actual start date of the drug for this particular study; we certainly are able to look at that because we have access to the databases to look at those kinds of questions, and we are looking at those kinds of questions in other studies. MSDF Can you put your findings in context to other studies at other latitudes, locals, healthcare systems? Dr. Kingwell Yeah, that's a complicated question. Certainly as studies are similar to the findings from some other studies. In particular, in Canada, there's been some very similar studies done in Manitoba and Nova Scotia where we've used exactly the same algorithm that was validated in those provinces led by Dr. Ruth Ann Marrie from the University of Manitoba. So, we found that prevalence and incidence estimates are very similar, and the findings and the change over time are also very comparable. When we look at some of the other countries, there are some similar findings in other places, but they vary a lot. When it comes to latitude, of course, we didn't have a big latitude gradient in our study; we were just looking in BC, and most of the people in BC live in one area around they're concentrated in the south of the province. But certainly there's a lot of variation in findings. But in order to get a look at the change over time, you really need to look within the same population on more than one occasion rather than comparing between populations over time. It's really difficult to make that comparison. MSDF Do you have a particularly good situation in BC in that you can link databases of diagnostic codes, physician visits, hospitalizations, pharmacy benefits, things like that that may not exist in other places with a less coordinated system? Dr. Kingwell Yeah, definitely. We are in a situation where we have access to some amazing databases. Many of the provinces in Canada have the same or similar databases, so it is like that. We also have the great situation that we have a clinical database in BC too where we've been collecting data on MS patients over a very long period of time. And we can link that data into the administrative databases, so we have the depth of the clinical data that we can link in the breadth of the administrative data, which has really put us in a very strong position to look at these long-term followup studies. MSDF Is it pretty smooth to be able to delve into these databases, or do you have any regulatory barriers like, in the US, we have all these HIPAA things. Do you have a problem with de-identifying or anything like that? Dr. Kingwell It's certainly not smooth. It can actually take us several years to access this data. It's a long process. It's a lot of paperwork for all of the reasons that…or some of the reasons you just mentioned. The data is actually all handled through…when we're at UBC, it's handled through Population Data BC, which is kind of the center between the Ministry of Health and the databases. And they strip all the identifiers off, so that by the time we receive any data … we, of course, have to go through a lot of privacy concerns and justification before we get any data sets. All the names and the numbers are removed, so that we don't know who anybody is in our database. Even when we're linking our clinical data, of course, everything is completely anonymized by the time we work on anything like that. MSDF What kind of conclusions can you draw from what you've found so far? Dr. Kingwell One of the main conclusions, I think, is that the incident population has leveled off, apparently, in BC. We started measuring incidence in 1996, and it's possible there were changes in incidence before that, but we can say that in the last 13 years – up to 2008 – that the number of cases has leveled off, which is good news it's not increasing. We also can say that the number of prevalent cases, on the other hand, is increasing a lot, so that the services need to be aware of that that there's going to be a demand on the healthcare system, there already is. And also that our results are very similar to as seen in other parts of Canada and comparable. The other main conclusion I would draw is that this study really shows how you can utilize these types of databases and reliable algorithms and ways of identifying people with MS in order to monitor the number of people and also changes over time. And also can give us some information about the people with MS and what kinds of drugs they're taking because we're linked into the PharmaNet databases, and we can do that too. So there's lots of questions we can answer about the population in British Columbia. [transition music] MSDF Thank you for listening to Episode Seventy-five of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Carol Cruzan Morton. <a href="http://Msdiscovery.org" rel="nofollow" target="_blank">Msdiscovery.org</a> is part of the nonprofit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is Vice President of Scientific Operations. <a href="http://Msdiscovery.org" rel="nofollow" target="_blank">Msdiscovery.org</a> aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances. [outro music] We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to <a href="mailto:editor@msdiscovery.org">editor@msdiscovery.org</a>. For Multiple Sclerosis Discovery, I'm Dan Keller.

Multiple Sclerosis Discovery -- Episode 75 with Dr. Elaine Kingwell