Why do patients with multiple sclerosis fail to follow treatment recommendations?
In Poland, more and more patients with multiple sclerosis are using modern therapies. However, even the best drugs fail if the patient does not take them as recommended. One of the main culprits is tiredness.
Silent progression, serious consequences
Multiple sclerosis (MS) is one of those diseases that cannot be easily categorized. Unpredictable, chronic, progressing in waves, from relapses to remissions, it affects young adults, more often women, in the prime of life. Although the symptoms can be subtle—such as tingling in the limbs, dizziness, and temporary visual disturbances—they can lead to serious health consequences.
In recent years, however, a milestone has been reached with the introduction of disease-modifying therapies (DMTs) for the treatment of MS, some of which, known as high-efficacy therapies (HETA), can effectively slow the progression of the disease and its consequences. Some drugs can be administered once every few months, while others require regular administration every few days or daily. The condition for achieving the therapeutic effects is adherence to the appropriate treatment regimen.
As Dr. Justyna Chojdak-Łukasiewicz from the Neurology Clinic at Wroclaw Medical University emphasizes, “adherence to medical recommendations is essential in the treatment of chronic diseases, including multiple sclerosis. Lack of adherence has negative effects not only on individual patients, but also generates additional expenses for the healthcare system.” Given this clinical and social context, it is worthwhile to explore the reasons for patients’ poor adherence to therapy to mitigate the scale of related problems.
I don’t take it because I don’t have the strength
In a study conducted by a team of scientists from Wroclaw, patients with relapsing-remitting multiple sclerosis admitted that they do not take their medication as they should. The average score on the ACDS scale (measuring adherence) indicated a moderate level of compliance with recommendations. The most common reason is… fatigue.
Not the kind that can be “slept off” or “ignored.” It is chronic fatigue, which patients describe as a state of exhaustion or physical and mental weakness. The results of the MFIS (Modified Fatigue Impact Scale) showed that the higher the level of fatigue, the lower the adherence.
This phenomenon is well known to neurologists but rarely analyzed in adherence studies.
Depression does not determine treatment
Depression and stress, although common among the study participants, did not show a direct link to adherence. It turned out that acceptance of the disease was a more important predictor. Patients who scored higher on the AIS scale assessing this aspect showed greater motivation to follow recommendations.
This does not mean that depression is irrelevant. On the contrary, it affects overall functioning, self-esteem, and quality of life. However, when it comes to treatment adherence, psychological acceptance of the diagnosis seems to be more important than emotional problems.
The system works, but the patient must cooperate
Poland currently compares favorably with the rest of Europe: MS treatment is reimbursed, and patients have access to regular check-ups and a wide range of therapies under the drug program.
“There have been recent positive developments in the treatment of multiple sclerosis, and we have more and more drugs at our disposal. When choosing a therapy, in addition to the course of the disease and the safety profile of the drugs, we also consider the patient’s preferences. These can be taken into account by adapting the choice of drug to the patient’s lifestyle (e.g., professional activity, family planning). Some highly effective drugs have a convenient dosing schedule (long intervals between doses)”, notes Dr. Chojdak-Łukasiewicz.
“If a patient has problems complying with recommendations, it is worth discussing the issue and determining the cause. Side effects associated with taking the medication can be alleviated, and additional measures can be recommended to reduce fatigue. As part of the drug program, we have the option of changing the drug in case of intolerance or objective obstacles to following the recommendations“, says Dr. Chojdak-Łukasiewicz.
The problem is that even regular monitoring and good communication with the patient cannot replace the patient’s daily decisions. This is where technology can help.
“Mobile applications, calendars, and planners that remind patients to take their medication also allow them to record their symptoms or other health issues and notify medical staff accordingly are very helpful. Such tools greatly facilitate the monitoring of the disease course and treatment, including adherence control“, emphasized the neurologist from Wroclaw.
Education and empathy
A clear conclusion from the study indicates that it is not possible to effectively treat multiple sclerosis without the cooperation of the doctor and the patient at every stage of therapy. The currently recommended comprehensive approach to treating this condition focuses not only on relapses and changes visible on magnetic resonance imaging, but also covers various aspects of patients’ functioning and their quality of life.
Therefore, it is essential to:
educate patients and their families about the importance of adherence and the impact of fatigue on it,
use energy conservation strategies,
implement rehabilitation — both physical and cognitive,
provide systematic psychological support,
ensure active communication between staff and patients.
As practice shows, even a small change, such as asking the question “Did you take your medication today?” or modifying the daily schedule accordingly, can help reinforce better habits and, consequently, more effective therapy. Because multiple sclerosis is a marathon, not a sprint.
For loved ones: how to support a person with MS?
Multiple sclerosis is a disease that affects not only the patient, but also their family and environment. Here are some practical tips on how to effectively support a loved one with MS.
Listen and observe. Fatigue in MS is often not immediately apparent. If a loved one says they “don’t have the strength today,” take it seriously. It’s not laziness or an excuse, it’s a symptom of the disease.
Help organize the day. Offer to help set priorities for the day. Organizing tasks can help the patient save energy for the most important activities.
Encourage rest without guilt. Help create a space where the patient can rest without feeling guilty. Fatigue in MS is a neurological symptom, not an emotional whim.
Remind them about their medication — gently. Supporting treatment adherence can involve setting shared reminders, using a medication tracking app, or simply asking, “Have you taken your medication?” without judgment.
Be the link to the doctor. If necessary, accompany the patient to appointments. Sometimes, fatigue or stress can cause a patient to overlook important issues. Your presence can help with communication with the medical team.
Remember to take care of yourself. Living with a sick person can be demanding. Don’t hesitate to seek support from a family group; therapy or talking to your family doctor are natural ways to take care of yourself.
This article is based:
Adherence to therapeutic recommendation in relapsing-remitting multiple sclerosis patients Frontiers in Immunology
Authors: Justyna Chojdak-Łukasiewicz, Aleksandra Kołtuniuk, Ewa Sawicka , Anna Pokryszko-Dragan
DOI:
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