Drug effectiveness is the most important factor – Survey results
A recent survey on MSology found that the most important consideration for people taking a medication for their MS is that the treatment must be effective – it must slow progression of disability without causing serious side effects. The findings contrast with the results of recent surveys that suggested that other factors, such as lifestyle or convenience considerations, are important to people with MS (Schlegel and colleagues. Int J MS Care 2018;20:279-286).
The MSology survey was conducted in English and French during the period February 14 to March 24, 2020. A total of 224 people completed the survey. Results were analysed for respondents from Canada (n=203). Most respondents were women (85%) and the average age was 49 years. Most people had long-standing illness. The average time living with MS was 13 years; 21% were diagnosed 20 or more years ago. People said they had a good understanding of MS (average score 7.3 out of 10) but had less understanding about MS treatments (average score 5.5 out of 10).
Despite a long history with MS, many people (43%) reported that they had little or no disability, and 23% said they had moderate disability but their walking ability was still unaffected. About 13% said their walking ability was somewhat affected and they had problems in daily life; 6% said they sometimes used a cane; 7% said they routinely used a cane; and 7% reported more severe disability (need for two canes, a wheelchair/scooter or confined to bed).
The level of disability that people reported very much depended on the number of years spent with MS. The average self-rated disability score was 1.3 (some symptoms but no disability) in the first two years; 1.5 (mild disability) in years 2-5; 2.2 (moderate disability but walking still unimpaired) in years 6-10; 2.6 (moderate disability with some walking impairment) in years 11-20; and 3.1 (moderate disability with some walking impairment and problems in daily life) after 20 years.
Most people (72%) said they were currently taking a disease-modifying therapy (DMT) for their MS. About 8% said they had stopped their treatment and 20% said they had never started a therapy. Among those taking a DMT, most were taking an oral medication, such as Aubagio (18%), Tecfidera (15%) and Gilenya (11%), or an injectable drug such as Copaxone (18%) or one of the interferons (11%). The other DMTs people were taking were Ocrevus (15%), Mavenclad (7%), Tysabri (3%), and Lemtrada (2%). People with earlier disease or less significant disability were most likely to be taking Tecfidera, Copaxone or Aubagio. People with more severe disability were more often taking Ocrevus or Gilenya.
The survey asked people to rate the relative importance of different factors from 1 (least important) to 5 (most important). The most important goal when starting a treatment was to slow worsening of disability (average 3.76); the least important goals among those listed were to manage MS symptoms (average 2.37) and to slow cognitive impairment (average 2.69).
The most important qualities that people expected from their medication was efficacy (reducing relapses and MRI lesions) (average score 4.29), followed by no risk of serious side effects (average 3.6). Other factors (less serious side effects, convenience, the regimen interfering with daily life) were rated as relatively less important.
The risk of serious side effects (average score 4.20) was also considered to be the most important aspect of the treatment regimen. The lowest rated was concerns about how the regimen may affect pregnancy (average 1.23). This appears to reflect the age of respondents: the average age of those who considered pregnancy to be the most important factor was 38 years; the average age for those who thought it the least important factor was 49 years.
A treatment’s effectiveness – controlling MS without causing serious side effects – was the prime consideration throughout the course of treatment. The perceived efficacy of treatment was the main reason stated to continue on treatment (average score 4.62); while a perceived lack of efficacy (average score 3.83) was the main reason people gave for skipping doses or stopping treatment altogether. The main reason given for switching to another drug was to achieve better control of MS (average score 4.10).
While there has been much discussion about why people with MS choose a given treatment or why they don’t stick with the regimen, the survey findings suggest that the most obvious reasons appear to apply. People who start a treatment do so to control their MS, but will skip doses, switch drugs or stop treatment altogether if those benefits aren’t apparent or if the benefits are outweighed by serious side effects. Drug efficacy is the main motivator, whereas other considerations – nuisance side effects, dosing schedules, monitoring requirements – are considerably less important to people when evaluating their course of treatment.
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