For people with MS and cognitive problems, sticking with their disease modifying treatment (DMT) may be especially difficult, but there are strategies available that may help, according to findings published in Multiple Sclerosis and Related Disorders.
The literature often provides “forgetting” as a reason for poor adherence to these medications, treatments that reduce relapses and neuropsychological problems, slow disease progression, and improve QOL, but few studies have considered how cognitive challenges impact adherence, according to researchers.
To investigate this issue and identify strategies that may increase adherence, Roshan das Nair, PhD, and colleagues invited 257 eligible adults in the United Kingdom MS Register and in MS Society groups to complete questionnaires and be interviewed. Participants were an average of approximately 50 years of age and were currently prescribed DMTs. An estimated 75% were women, approximately 90% had relapsing-remitting MS; and 70% had fatigue, 37% anxiety, and 33% depression.
Memory Problems Common With Cognitive Impairment
Participants completed the Medication Adherence Questionnaire (MAQ) developed by the authors, the Perceived Deficits Questionnaire (PDQ), the Hospital Anxiety and Depression Scale (HADS), and the Fatigue Severity Scale (FSS).
Eight adherent and two non-adherent participants also took part in semi-structured interviews and completed the Symbol Digit Modalities Test (SDMT) oral version.
Although 94% of all participants reported being adherent defined as taking DMT as prescribed at least 80% of the time 59% missed one or more doses. Overall, 51% of all participants, including 80% of those with cognitive impairment versus 41% of those without, reported memory problems and 25% reported cognitive problems. Participants with cognitive problems had lower adherence than those without (87% vs 97%).
Common barriers in participants with versus without cognitive problems included nervousness (31% vs 8%), being too busy (45% vs 35%), side effects of injection (23% vs 16%), side effects of medication (25% vs 21%), fear of needles (20% vs 10%), running out of or being unable to refill prescriptions (29% vs 12%), being away from home and unable to access medication (38% vs 21%), not wanting medication to interfere with activities (40% vs 11%), dissatisfaction with the medication (22% vs 7%), not feeling like taking it (25% vs 7%), and being tired of taking it (25% vs 9%).
In interviews, participants often mentioned forgetting and concerns about self-injecting, side effects, impact on QOL, and whether they felt the benefit of DMT.
Injectable DMTs have been linked in pri or research with lower adherence and earlier discontinuation than infusions or oral medications, as well as with depression and lower QOL.
“In the current study, such difficulties, along – side difficulties accepting the diagnosis, appeared to be associated with a desire to forget about DMT (to avoid feeling trapped by the anxiety of taking it, or reminded of having MS and associated feelings of shame),” the authors noted.
Strategies to Increase DMT Adherence
Most participants reported forgetting to take their DMT, as well as strategies to remember to take it: developing a routine; using reminders, including phone, calendar, and online reminders; paper diaries, calendars, logs, and folders; and letters and cards sent through the mail. Participants also reported that accepting their diagnosis and dealing with DMT packaging and storage were challenging.
Investigators recommended that providers educate their patients with MS about feeling versus not feeling the benefits of DMTs, including placebo effects, and managing side effects by, for example, taking DMTs at night.
“Interventions need to support adjustment (eg, addressing unhelpful thoughts about MS, DMT, and the self, and associated feelings of shame), and reduce anticipatory anxiety and avoidance (eg, by addressing treatment burden),” Dr. das Nair and colleagues wrote.