Exploring the treatment experience – survey results
This year marks the 25th anniversary of the first large-scale trial of a drug to modify the disease process in people with multiple sclerosis (Interferon-beta MS Study Group. Neurology 1993;43:655-661). That study was the first to show that a treatment, Betaseron, could reduce the frequency of relapses in people with MS, and launched the medication era in MS. Two other interferons followed (Avonex, Rebif), along with the non-interferon drug Copaxone, collectively known as the injectable medications (with Plegridy a recent addition). Two other categories have also emerged: infusion drugs (Tysabri, Lemtrada, Ocrevus), beginning in 2005; and oral drugs (Gilenya, Aubagio, Tecfidera, Mavenclad), beginning in 2010.
With a dozen medications from which to choose, an obvious question is: are all these drugs necessary? Have oral drugs supplanted the injectables, or do they still have a role? To address these and other questions, MSology conducted a series of reader surveys over the past year – about your experience on treatment, what you expect from a medication, and what’s important to you. A big thank you to the 507 people who responded!
Overall, about 50% of people on an MS medication are taking an oral drug, and about 40% take an injectable (infusion drugs are generally reserved for people who haven’t responded to something else). These two groups of people – the Orals and the Injectables – are somewhat different. When considering convenience, those on an oral med are most likely to say that taking a pill is the most convenient factor; whereas those on an injectable find that side effects and how often you need to take the drug are more important considerations. (Oral drugs are most often taken once or twice a day; injectables are taken less often – either three times a week, once a week or once every two weeks.)
There are three main factors to consider with a medication: how you take it, how often you take it, and the burden of side effects while on it. Various surveys have examined the importance of these factors in how a medication is selected. We wanted to know how people trade off one attribute against another, so one MSology survey asked readers about their preferences. Given the choice of one pill a day or one injection a day, about 96% of people preferred an oral. But that preference started to decline once there was an option of less frequent dosing – either a once-weekly injection, a once-monthly infusion, or a once a year course of infusions. One in 4 people preferred one course a year rather than one pill a day, and 1 in 3 preferred the once-annual therapy rather than two pills a day. It should be noted that another factor comes into play: the inconvenience of travelling to a clinic to receive the transfusion, which may be difficult to arrange for people living at a distance from an infusion centre.
How do side effects affect the treatment decision? Given the choice of more frequent dosing and less frequent side effects (once a day vs. once a week; side effects twice a month vs. 7 times a month), all respondents chose the regimen with less frequent side effects. However, the preferences changed if the oral created more of a side effect burden: 61% said they’d prefer a less frequent injection (once a week) with fewer side effects (twice a month) compared to a once-daily oral with more side effects (seven times a month). The same was true when comparing oral and infusion drugs: most people preferred the drug with less frequent side effects regardless of how the drug was taken.
A separate MSology survey looked at overall satisfaction with different treatments. It found that respondents were highly satisfied with the medication they were currently taking – and the results were very similar. The average satisfaction rating with Tecfidera was 8.1, which was similar to the scores with Avonex (7.7), Copaxone (7.6) and Rebif (7.5). This suggests that once a person commits to a course of therapy – injectable or oral – they work the regimen into their usual routine and learn how to live with the drug.
In our survey of interferon users, the most popular choice among respondents was Avonex. About one-half had been taking their drug for over 10 years, suggesting that the drug was working for them and they were able to tolerate any unwanted effects over the long term. However, 40% had been taking the drug for fewer than five years, indicating that physicians continue to prescribe interferons despite the other options available.
Starting with an interferon was generally a shared decision by the neurologist and the person with MS. Interestingly, among those who said that the choice of therapy was 100% their decision, 66% opted for Avonex. A similar result was seen when 100% of the decision was attributed to the physician: 60% chose Avonex. This may be because Avonex has less frequent dosing (once a week), and it’s injected into the muscle, which may result in fewer skin reactions.
Was an interferon the right choice? Only 11% said that they’d take something else if they could. The rest appeared satisfied with the decision. A key factor appeared to be less frequent dosing (as seen earlier): all of the Avonex users said they were happy taking their drug once a week, and two-thirds of Rebif users liked the three-times-per-week schedule. The biggest drawback was flu-like symptoms (chills, muscle aches, etc.), which were the most bothersome side effect with the interferons.
To examine the “grass is greener” phenomenon, we asked people how interferons stacked up against the oral drugs. Overall, 36% thought they were more effective than oral drugs, 58% thought they were about the same, and 6% thought they were less effective. With respect to side effects, 18% said there was less of a burden with an interferon, 20% thought there was less burden with an oral, and 62% felt they were about the same. However, the perceived safety was somewhat different: 51% thought interferons were safer, 3% thought orals were safer, and 46% thought they were about the same.
No medication is right for everyone. Each has a “personality” that may or may not be a good fit for a given person. For many people, starting with an injectable is the best option – they are very safe medications that allow them to ease into the idea of taking therapy regularly. If they respond well enough and can continue to take it, there’s no need to make a switch. But if there are intolerable side effects, or a more potent treatment is needed, it’s reassuring to know that the treatment journey isn’t over – there are many other options available for controlling MS.
Share this article
Facebook Twitter pin it! Email