Why some Multiple Sclerosis- Patients stop Disease Modifying Treatment in MS and why some Don’t start at all

Nina Grytten Torkildsen
National Multiple Sclerosis Competence Centre, Dept. of Neurology, Haukeland University Hospital

Although everyone with relapsing remitting multiple sclerosis (RRMS) is advised to begin disease modifying therapy (DMT) in accordance with international consensus guidelines, interruption in such therapy is common. Previous studies have shown that between 9{cf2c27d335602139ec9071daca508545599ba8f9ca09b366fd00e5c28736f208} and 46{cf2c27d335602139ec9071daca508545599ba8f9ca09b366fd00e5c28736f208} of the people with MS interrupt DMT. In order to provide support and motivate patients in following the prescribed regimen, knowledge into risk factors for stopping and non- starting DMT is needed.
Research on stopping DMT among people with MS have mainly focused on therapeutic factors such as lack of effect, adverse events, self-injection anxiety and injection-site reactions or disease-related characteristics such as disability, depression and fatigue. However, a new multicenter cohort study published online in Acta Neurologica Scandinavica (Grytten et al., 2012) has revealed that the reason to stopping and non-starting DMT in MS is also related to individual and psychosocial factors.
The authors explored the frequency of non-starters and stoppers of DMT in a cohort of people recently diagnosed with MS. They identified reasons for non-starting or stopping DMT measured by demographic variables, social support (The Interpersonal Support Evaluation List – ISEL) and disease-related stress (The Impact of Event Scale – IES). They performed a multicenter retrospective cohort study using postal surveys completed by people with MS comprising all patients diagnosed with MS during 2000–2007 at four university clinics in Norway. The results revealed that of the 424 respondents (81{cf2c27d335602139ec9071daca508545599ba8f9ca09b366fd00e5c28736f208}), 180 (42{cf2c27d335602139ec9071daca508545599ba8f9ca09b366fd00e5c28736f208}) were still using the first prescribed DMT, 83 (20{cf2c27d335602139ec9071daca508545599ba8f9ca09b366fd00e5c28736f208}) were using DMT after switching DMT at least once, 53 (12{cf2c27d335602139ec9071daca508545599ba8f9ca09b366fd00e5c28736f208}) had ended DMT and 108 (25{cf2c27d335602139ec9071daca508545599ba8f9ca09b366fd00e5c28736f208}) had never started DMT. The risk of not starting DMT was associated with increasing age at diagnosis, the region and disease-related stress and avoidant trauma coping. The risk factors for stopping therapy after the first prescribed DMT were adverse events and high education.
A possible explanation for why some patients diagnosed later in life doesn’t start DMT is that these patients might have a more benign disease course and subsequently are reluctant towards DMT. In case of long term benign disease course, some neurologists advice patients to wait and see whether the disease will remain stable. Also, not starting DMT might be a part of an avoiding trauma coping strategy which patients use to elude what might be associated with MS.
Patients with high education may be more informed about MS and realize that the treatments are only partially effective and consequently they may be less motivated to continue DMT. However, education and employment were correlated, and patients with more education were therefore more likely to be employed than patients with less education. Thus, patients still employed might be less motivated to continue invasive DMT, which interferes with everyday life management. The timely and often painful injections of DMT and the following adverse events might be troublesome in everyday life and work management.
Treatment continuity is critical for effective medical treatment of MS and consequently reducing the utilization of health care resources and hence health care costs. Although patients are responsible for continuing prescribed treatment, medication-taking behavior is also a psychosocial and an organizational issue, such as follow-up and the conviction of the prescribing physician.
Oral DMT is expected to improve adherence. Our findings indicate that challenges to patients’ continued therapy are likely to persist despite the introduction of oral DMT in MS.


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