BROADCASTS.com

Published: April 29, 2016, 12:28 p.m.

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[intro music]

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Host \\u2013 Dan Keller

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Hello, and welcome to Episode Seventy-five of Multiple Sclerosis\\nDiscovery, the podcast of the MS Discovery Forum. I\\u2019m Dan\\nKeller.

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Today\'s interview features Elaine Kingwell, a research associate\\nat the University of British Columbia in Canada. She and her\\ncolleagues have gathered and recently published incidence and\\nprevalence figures for people with MS in the province. I spoke with\\nDr. Kingwell at the ECTRIMS meeting in Barcelona in October to find\\nout the reason for the study and to explore the changing trends she\\nfound and their significance.

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Interviewer \\u2013 Dan Keller

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What prompted you to do this study?

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Interviewee \\u2013 Elaine Kingwell

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In British Columbia, we know that Canada has got a high\\nincidence and prevalence rate of MS, but we don\'t actually have the\\nnumbers, so we\'ve been doing a lot of research on MS in British\\nColumbia for many, many years. But we don\'t have the incidence\\nnumbers for BC, and also the prevalence is out of date \\u2013 the\\nestimates that we have \\u2013 so it really was time to get an idea on\\nhow many people we have in BC. And also, we wanted to look at\\nchange over time, and we have access to some amazing administrative\\ndatabases in BC and also had some algorithms that we could use that\\nhave been validated, so that we could identify people with MS in\\nthe databases.

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MSDF

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Why are these numbers important?

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Dr. Kingwell

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It\'s important for lots of different reasons. For instance, it\'s\\nimportant to monitor trends over time. We\'re able to do that in BC,\\nbecause we have data going back several years. And so, it\'s\\nimportant to see if populations are changing, so that we can get\\nsome clues about whether environmental factors might be changing.\\nAnd also, for the prevalence estimates, it\'s important to know how\\nmany people have MS in the province, so that healthcare planning\\ncan be done wisely and resources.

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MSDF

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How do you go about looking at this?

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Dr. Kingwell

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So as I mentioned, we did use the health administrative\\ndatabases in BC, which are big databases that collect data on the\\nwhole population. A number of different databases were combined,\\nincluding hospital admissions and physician visits. It\'s all claims\\ndata, so that when someone goes to see their physician, a billing\\nclaim gets put in with their diagnosis. So we use these codes to\\nidentify people with MS. And we basically estimated the number of\\npeople with MS [over] several years \\u2013 one year at a time \\u2013 so that\\nwe could look at change over time for prevalence. And we also\\nestimated the incidence, the number of new cases each year,\\nstarting in \'96 right up until 2008.

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MSDF

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What did you find in terms of incidence and prevalence?

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Dr. Kingwell

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Well we found the incidence and prevalence are both high. The\\nincidence was around 7.8 per 100,000 per year, and the prevalence\\nwas around 180 to 200 per 100,000 in 2008. So they were both high,\\nwhat is relatively high compared to other places in the world and\\nsimilar to rates that have been found in Europe, in Northern\\nEurope, and other parts of Canada, as well.

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MSDF

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And the prevalence is increasing over time?

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Dr. Kingwell

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Yeah, we found that it increased quite significantly by about\\n4.7% per year, so a big increase. It also shifted in the\\npredominant age of people, so that the peak prevalence age was\\naround in the mid-40s in the 1990s, and it\'s now shifted up into\\nthe mid-50s. So the population of people with MS is getting older\\nin BC. We also saw with incidence \\u2026 quite differently, the\\nincidence was not changing over time, so it stayed relatively\\nstable; it did fluctuate as incidence always does. But over time,\\non average, it stayed the same.

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MSDF

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Are those two pieces combined\\u2014increasing prevalence and older\\nage\\u2014good news?

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Dr. Kingwell

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I don\'t know if any of it\'s good news. It means that we have an\\nolder population that are probably requiring more care, as they get\\nolder, for the MS, as well as, of course, comorbidities they may\\nhave. So, it\'s certainly something that healthcare planners need to\\nbe aware of. And we have an aging population, in general, in\\nCanada, as we do in other parts of the world, but we have a lot\\nmore people with MS at an older age.

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MSDF

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But doesn\'t that mean they\'re surviving longer?

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Dr. Kingwell

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That\'s the good news part, yeah. And it does mean that, because\\nwe\'re not seeing a change in incidence, the most likely explanation\\nis that the survival is better. People are surviving longer with\\nMS. We\'re seeing an increase in survival for the whole population,\\nbut we\'re also seeing an increase in survival for people with\\nMS.

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MSDF

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What about the gender ratio in terms of prevalence but also in\\nterms of survival?

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Dr. Kingwell

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We\'re seeing a gradual increase in the number of women relative\\nto men in prevalence. That\'s most likely due to the fact that women\\ndo survive longer than men, on average, of course that\'s highly\\nvariable. But on average, they survive longer than men. And so, if\\nyou\'ve got an aging population and three-quarters of the people\\nwith MS are women, then you\'re going to find the number of women\\nare increasing.

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MSDF

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How did the socioeconomic status affect the findings?

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Dr. Kingwell

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Yeah, so we did actually look at socioeconomic status. It was\\nmeasured at the neighborhood level, so not the individual level.\\nIt\'s linked into the databases by postal code. We did find that\\nthere were more people with MS in the higher levels of\\nsocioeconomic status, but the absolute differences were not that\\ngreat. And, when we looked at this, it was not linked or adjusted\\nfor other factors. So there\'s so many things that can be attached\\nto socioeconomic status and, of course, age is one of them, and\\nyour age is greatly related to whether you have MS or not. And so,\\nthere are other possible explanations, so we don\'t put a lot of\\nemphasis on that. When we look at socioeconomic status, we really\\nthink that you need to design a study specifically to look at\\nthat.

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MSDF

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Could you look at the use of disease-modifying drugs according\\nto socioeconomic status?

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Dr. Kingwell

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We could, and we have actually looked at that in other studies.\\nAgain, as a kind of an adjustment factor or something to bear in\\nmind when we\'re looking at lots of variables at once, we find\\nthere\'s the same kind of trend that people in the higher levels\\ntend to be on drug more often. But again, the absolute numbers are\\nvery small, and it could totally be related to age or other factors\\nthat are not adjusted in.

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MSDF

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Were the data there to be able to look at early initiation of\\ndisease-modifying drugs and any effects it may have had?

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Dr. Kingwell

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Well for this particular study \\u2013 in the incidence and prevalence\\nstudy \\u2013 we looked at just whether people had ever had drug. We\\nlooked at the incident population to see if they\'d had it in the\\nlast three years or so\\u2014that\'s the three years from their first\\nclaim, which is close to when they\'re first diagnosed or recognized\\nas having MS. And for the prevalent population, we looked at\\nwhether they\'d ever had MS. So we were able to tell that about a\\nthird of the cases had had a disease-modifying drug. And this study\\ndid start way back in the early 90s and then mid-90s for the\\nincidence cases. So, you would expect it to be a lower rate because\\nthe drugs were just starting to become available in the mid-90s. So\\nwe didn\'t look at the actual start date of the drug for this\\nparticular study; we certainly are able to look at that because we\\nhave access to the databases to look at those kinds of questions,\\nand we are looking at those kinds of questions in other\\nstudies.

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MSDF

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Can you put your findings in context to other studies at other\\nlatitudes, locals, healthcare systems?

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Dr. Kingwell

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Yeah, that\'s a complicated question. Certainly as studies are\\nsimilar to the findings from some other studies. In particular, in\\nCanada, there\'s been some very similar studies done in Manitoba and\\nNova Scotia where we\'ve used exactly the same algorithm that was\\nvalidated in those provinces led by Dr. Ruth Ann Marrie from the\\nUniversity of Manitoba. So, we found that prevalence and incidence\\nestimates are very similar, and the findings and the change over\\ntime are also very comparable. When we look at some of the other\\ncountries, there are some similar findings in other places, but\\nthey vary a lot. When it comes to latitude, of course, we didn\'t\\nhave a big latitude gradient in our study; we were just looking in\\nBC, and most of the people in BC live in one area around they\'re\\nconcentrated in the south of the province. But certainly there\'s a\\nlot of variation in findings. But in order to get a look at the\\nchange over time, you really need to look within the same\\npopulation on more than one occasion rather than comparing between\\npopulations over time. It\'s really difficult to make that\\ncomparison.

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MSDF

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Do you have a particularly good situation in BC in that you can\\nlink databases of diagnostic codes, physician visits,\\nhospitalizations, pharmacy benefits, things like that that may not\\nexist in other places with a less coordinated system?

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Dr. Kingwell

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Yeah, definitely. We are in a situation where we have access to\\nsome amazing databases. Many of the provinces in Canada have the\\nsame or similar databases, so it is like that. We also have the\\ngreat situation that we have a clinical database in BC too where\\nwe\'ve been collecting data on MS patients over a very long period\\nof time. And we can link that data into the administrative\\ndatabases, so we have the depth of the clinical data that we can\\nlink in the breadth of the administrative data, which has really\\nput us in a very strong position to look at these long-term\\nfollowup studies.

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MSDF

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Is it pretty smooth to be able to delve into these databases, or\\ndo you have any regulatory barriers like, in the US, we have all\\nthese HIPAA things. Do you have a problem with de-identifying or\\nanything like that?

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Dr. Kingwell

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It\'s certainly not smooth. It can actually take us several years\\nto access this data. It\'s a long process. It\'s a lot of paperwork\\nfor all of the reasons that\\u2026or some of the reasons you just\\nmentioned. The data is actually all handled through\\u2026when we\'re at\\nUBC, it\'s handled through Population Data BC, which is kind of the\\ncenter between the Ministry of Health and the databases. And they\\nstrip all the identifiers off, so that by the time we receive any\\ndata \\u2026 we, of course, have to go through a lot of privacy concerns\\nand justification before we get any data sets. All the names and\\nthe numbers are removed, so that we don\'t know who anybody is in\\nour database. Even when we\'re linking our clinical data, of course,\\neverything is completely anonymized by the time we work on anything\\nlike that.

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MSDF

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What kind of conclusions can you draw from what you\'ve found so\\nfar?

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Dr. Kingwell

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One of the main conclusions, I think, is that the incident\\npopulation has leveled off, apparently, in BC. We started measuring\\nincidence in 1996, and it\'s possible there were changes in\\nincidence before that, but we can say that in the last 13 years \\u2013\\nup to 2008 \\u2013 that the number of cases has leveled off, which is\\ngood news it\'s not increasing. We also can say that the number of\\nprevalent cases, on the other hand, is increasing a lot, so that\\nthe services need to be aware of that that there\'s going to be a\\ndemand on the healthcare system, there already is. And also that\\nour results are very similar to as seen in other parts of Canada\\nand comparable.

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The other main conclusion I would draw is that this study really\\nshows how you can utilize these types of databases and reliable\\nalgorithms and ways of identifying people with MS in order to\\nmonitor the number of people and also changes over time. And also\\ncan give us some information about the people with MS and what\\nkinds of drugs they\'re taking because we\'re linked into the\\nPharmaNet databases, and we can do that too. So there\'s lots of\\nquestions we can answer about the population in British\\nColumbia.

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[transition music]

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MSDF

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Thank you for listening to Episode Seventy-five of Multiple\\nSclerosis Discovery. This podcast was produced by the MS Discovery\\nForum, MSDF, the premier source of independent news and information\\non MS research. MSDF\\u2019s executive editor is Carol Cruzan Morton.\\nMsdiscovery.org is part of the nonprofit Accelerated Cure Project\\nfor Multiple Sclerosis. Robert McBurney is our President and CEO,\\nand Hollie Schmidt is Vice President of Scientific Operations.

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Msdiscovery.org aims to focus attention on what is known and not\\nyet known about the causes of MS and related conditions, their\\npathological mechanisms, and potential ways to intervene. By\\ncommunicating this information in a way that builds bridges among\\ndifferent disciplines, we hope to open new routes toward\\nsignificant clinical advances.

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[outro music]

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We\\u2019re interested in your opinions. Please join the discussion on\\none of our online forums or send comments, criticisms, and\\nsuggestions to editor@msdiscovery.org.

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For Multiple Sclerosis Discovery, I\'m Dan Keller.

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