Delays in diagnosis, treatment: MS patient survey


Most MS patients are older at diagnosis, often delay starting treatment, and are likely to remain with the first-choice treatment, according to a survey conducted on MSology, the sister site of NeuroSens.

MSology is a free news and information website visited by about 3,000 MS patients per month ( The survey was conducted in English and French in February-March 2017. The number of survey respondents was 387: 85% were female, 85% lived in Canada, and 10% lived in the U.S. Patients were generally older (51.7% were aged 50 years or older; 29.4% were aged 41-50 years). Duration of MS was >10 years for 51.8%; 26.8% had been living with MS for 5 years or less. The estimated age at MS diagnosis was late thirties/early forties. With respect to employment status, 38.6% of respondents reported they were employed full- or part-time; 27.4% were unemployed; 32.2% were retired; and 1.9% were students.

Regarding the use of disease-modifying therapies (DMT), 72.1% were currently on treatment, 19.9% had stopped therapy, and 8.3% had never started treatment. Persons who were unemployed (n=103) or retired (n=120) were more likely to have stopped a treatment (26.9% and 24.7%, respectively). The frequency of DMT use increased with age, from 63% of respondents aged 21-30 years, to 87% of those aged >50 years.

In the DMT group, 67.1% had lived with MS for >5 years. However, 70.6% had been on a DMT for 5 years or less, suggesting a considerable delay before treatment was initiated. Indeed, 34.5% had been on a medication for less than 2 years.

The most commonly used DMTs were interferons (Rebif, Avonex, Betaseron, Plegridy; 22.1%), Tecfidera (21.6%), Copaxone (19.7%) and Aubagio (16.3%). Use of higher-efficacy agents (Tysabri, Gilenya, Lemtrada) was less common (20.2%).

Overall, 48.2% reported that they were on their initial DMT. Among those who had switched treatments, 33.5% had received one prior medication, 36.3% had received two prior medications, and 30.2% and received three or more prior medications. The most commonly mentioned prior medications were Copaxone, Rebif and Avonex. These results indicate that in most cases, MS patients start with a front-line injectable or oral, have a 50:50 chance of being switched, but are unlikely to be escalated to a higher-efficacy therapy.

In the group that had never started treatment, the most common reason cited was progressive disease; all self-identified progressive patients stated that they would start a therapy if one were available.

In the group who stopped treatment and never restarted, the most common DMTs at the time of quitting were Copaxone, Rebif, Avonex, Betaseron and Tecfidera. The treatments least commonly associated with permanent discontinuation were Tysabri and Aubagio.

The survey also questioned MS patients about their use of other therapies. Overall, 34.1% said they took alternative/complementary therapies. A total of 64.9% said they take vitamin/mineral supplements; vitamin use was lower among francophones in Quebec (39%). In addition, 83.1% said they regularly take vitamin D for their MS.

The survey was developed by Editions Lind, publisher of MSology and NeuroSens. Funding of the survey was provided by Lind without commercial sponsorship.

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