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Consider psychological factors when assessing adherence to MS treatment

By Jeff Craven

credit: Sazhnieva Oksana/Shutterstock

Reasons for not adhering to treatment among patients living with multiple sclerosis (MS) involve psychological factors just as much as concerns about treatment effectiveness or side effects, according to recent research published in the International Journal of MS Care.


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“Adherence is of utmost relevance and a substantial challenge in MS,” Christoph Heesen, MD, of the Institute for Neuroimmunology and Multiple Sclerosis at University Medical Center Hamburg-Eppendorf, Hamburg, Germany, said in an interview. It may take years for a patient to see a therapeutic benefit from a treatment, and studies showing systemic and qualitative work on the subject is lacking, he added.

Dr. Heesen and colleagues performed an interview-based study of 23 patients with MS who were interviewed about their medication history, their adherence to treatment, reasons for any nonadherence, and how they worked with their clinician to make treatment decisions.

Patients with MS were divided into two groups based on whether they had received first- or second-line treatments. There were 11 patients in the first-line group and 12 patients in the second-line group, with baseline characteristics varying by group and by gender. In the first-line group, the eight women had a median age of 36.5 years and a disease duration of 4 years, compared with the three men who had a median age of 31 years and a disease duration of 7 years. The nine women in the second-line group had a median age of 38 years and a disease duration of 16 years, while the three men had a median age of 45 years and a disease duration of 8 years.

Dr. Christoph Heesen

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Some patients included in the study had already switched to another medication, the researchers wrote. Patients were on teriflunomide (one woman, two men) and dimethyl fumarate (seven women, one man) as a first-line treatment, while three women and one man received natalizumab, alemtuzumab, or fingolimod as a second-line treatment.

The results showed all patients in the first-line group said they had been nonadherent at some point during treatment; three women in this group reported they were currently nonadherent. In the second-line group, six patients (four women, two men) said they had been nonadherent at some point, but only one patient was currently nonadherent.

Reasons for nonadherence varied by patient and by group. Unintentional nonadherence was a factor in both groups. Patients in the first-line group cited burdensome side effects and burden of treatment management as reasons for nonadherence, with side effects, method of administration (injection vs. oral), and belief in having no symptoms after taking the medication listed among the more common reasons for nonadherence. Adherence in the first-line group was supported by feelings of treatment effectiveness, fear of relapsing or symptom worsening, ability to cope with any side effects, and ability to fit the treatment into daily life.

In the second-line group, major reasons for non-adherence were lack of belief in the treatment, along with side effects, and frustration with the disease. Patients receiving second-line treatments said medication effectiveness, responsibility for others, self-efficacy, treatment not restricting daily life, and trust in the physician were major factors for adherence.

Commenting on the research, Patricia K. Coyle, MD, director of the MS Comprehensive Care Center at Stony Brook (N.Y.) University Medical Center, said in an interview that the paper by Dr. Heesen and colleagues was a small study but is important because it focused on personalized interviews with patients, and would have provided even more value if the number of patients in the study were higher.

However, categorizing reasoning for nonadherence based on whether MS patients are receiving first- or second-line therapy may not be relevant to clinicians in the United States because it is not how they are treating these patients, Dr. Coyle said. She noted the first- and second-line treatment concept in MS care is not as broadly adopted in the United States. There are exceptions, like alemtuzumab being recommended as a third-line treatment and oral cladribine recommended as a second-line treatment, but many disease-modifying therapies are assessed by clinicians based on efficacy.

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“A lot of people critique the first-line, second-line, third-line type of approach,” she said. “They would say in any given patient, [they] should be able to use any treatment in that patient if [they] think it’s the best one for them.” 

Regarding the data on adherence, Dr. Coyle said the reasons patients in the second-line group provided make sense, since they would be more likely to be interested in a treatment’s efficacy and their disease severity as important factors for switching medications, compared with the first-line group, “where by definition you didn’t have a switch because of concerns about the level of your MS disease activity and the importance of efficacy.”

The study also included treatments for which adherence is essentially guaranteed, Dr. Coyle said. “You have to come to an infusion center to get it.” The data from patients on whether they are taking their oral medication, on the other hand, is based on the interview only and subject to recall of whether the patient is taking the medication correctly or forgot to take it.

“All of the oral medications are great, but we’re totally dependent on the patient taking them,” Dr. Coyle said. 

Nonadherence to MS treatment is a “key justification” for shared decision making with these patients, which includes educating patients on the disease and treatment options, setting realistic expectations, and allowing for the free flow of communication between patient and clinician, Dr. Coyle noted. “You discuss the options, you seek from the patient what things they really value to ultimately come up with what is the best choice for them.” Screening for depression – a potential barrier to adherence – and assessing a patient’s support system are also important components for success, she added. 

Dr. Heesen said that a second quantitative survey study has been conducted and will be published in an upcoming issue of Multiple Sclerosis and Related Disorders. 

This study was funded by a grant from Genzyme. Dr. Heesen reports receiving research grants, speaker’s bureau appointments, and travel compensation from Biogen, Genzyme, Sanofi-Aventis, Bayer Healthcare, Merck Serono, Teva Pharma, and Novartis. One coauthor reported receiving a grant from the National MS Society. Two authors reported Genzyme paid them salaries. The other authors reported no conflicts of interest. Dr. Coyle reported that she is a consultant for Accordant, Alexion, Biogen, Genentech/Roche, Genzyme/Sanofi, GlaxoSmithKline, Mylan, Novartis, Serono, and TG Therapeutics, and receives research funding from Actelion, Alkermes, Corrona, Genentech/Roche, MedDay, NINDS, and Novartis.