Detection and diagnosis
Treatment initiation
Untreated patients
Most Canadian patients with multiple sclerosis learn they may have MS from their family doctor or other healthcare professional rather than a neurologist, according to the results of a recent survey. From February to May 2025, Lind Publishing conducted twin surveys of MS healthcare professionals on NeuroSens and of MS patients on its sister website MSology (www.msology.com). There were 64 responses to the HCP survey and 66 responses to the patient survey.
Detection and diagnosis
One-third of MS patients first heard they may have MS from their family physician and about 25% from another healthcare professional (e.g. optometrist, physiotherapist). About 22% heard about MS from an MS clinic neurologist and 12% from a nurse. Only 2% heard about MS from a community neurologist. Actual confirmation of an MS diagnosis was primarily by an MS clinic neurologist (52%) or a community neurologist (37%). About 59% of patients said they were diagnosed within three years of symptom onset.
Treatment initiation
A total of 68% of patients said their neurologist talked to them about starting a disease-modifying therapy (DMT) within a year of diagnosis. About 70.8% said they started a DMT within a year. This is similar to nurses’ estimates (70.6%) in the HCP survey but lower than neurologists’ estimates (89.6%).
Respondents to the patient survey tended to be older: 31% were aged 46-55 years, 24% aged 56-65 years and 23% were older than 65 years. A total of 75% said they had been living with MS for >10 years. This may explain why the highest proportion of patients (28%) said their initial DMT was glatiramer acetate. Indeed, 69.8% said they started treatment with a platform injectable or oral DMT. Ocrelizumab was the first therapy for 20.8%, ofatumumab for 5.6% and natalizumab for 3.8%. No patient reported starting with fingolimod, cladribine or alemtuzumab. Interestingly, patients were more likely to be started on a higher-efficacy DMT if they were diagnosed by an MS clinic neurologist rather than a community neurologist (58% vs. 18%).
A total of 35.9% reported that they were still taking the initial therapy; 49.1% said they had switched to another agent. In addition, 15.1% said they stopped treatment altogether after the initial treatment was not effective or well tolerated. This suggests that a hidden cost of a treatment escalation approach is that some patients may give up on therapy if they feel it is not worthwhile.
The most common second-use agents, according to patients, were ocrelizumab (19.2%), teriflunomide (15.4%), and cladribine (15.4%). First switches were evenly divided between a modest-efficacy DMT (42%) and a higher-efficacy DMT (46%). Most switches were due to lack of efficacy (32.6%) or the patient’s complaints about the side effect burden (25.6%). Other common reasons were the inconvenience of the regimen (16.3%), the patient’s report of lack of efficacy (9.3%), and the patient wanting to try a different medication (6.9%). Few patients (2.3%) said the switch was due to their concerns about long-term safety.
Untreated patients
Overall, about 28% of MS patients said they are currently untreated. This is similar to what nurses reported (31%) in the HCP survey but higher than physicians’ estimates (21%). The most common reason for being untreated cited by 41.4% of patients was that treatment would not be effective, primarily because of their age or SPMS onset. About 13.8% said they are untreated because of side effects or other reasons, 13.8% because of concerns about short- or long-term side effects, about 10.3% because the regimen was not convenient (e.g. living too far from an MS clinic or infusion centre), and 10.3% because their MS was not severe enough to warrant therapy. Few patients (3.5%) said they were untreated because they preferred an alternative approach (e.g. diet, lifestyle modification, alternative/complementary therapies). While HCPs said a common reason why a person remains off medication was treatment refusal, only 6.9% of patients said they were untreated because they refused therapy or thought that DMTs were ineffective.
A majority of patient respondents said they see their neurologist every six months (28.3%) or annually (53.3%). However, clinic visits were generally less frequent for the subgroup of untreated patients: one-third said they visit the clinic less often than once per year and 20% they do not have scheduled visits but see their neurologist only if they are having a problem. The HCP survey similarly found that untreated patients were seen less often than those taking a DMT.
A limitation of the online survey was the older age of respondents, which may reflect the internet habits of older versus younger patients; younger, less symptomatic patients may be less likely to seek information about MS, access websites rather than social media platforms, or participate in online surveys. As a result of respondents’ age and disease duration, there was higher initial and subsequent use of lower-efficacy DMTs. The trend in recent years has been the more widespread use of higher-efficacy DMTs early in the treatment course, which may be associated with improved long-term outcomes.