Perspectives and experiences of Dutch multiple sclerosis patients and multiple sclerosis-specialized neurologists on injectable disease-modifying treatment

Leo H Visser,1,2 Marco A Heerings,3 Peter J Jongen,4,5 Karin van der Hiele1,3,6 1Department of Neurology, Elisabeth-TweeSteden Hospital, Tilburg, 2Ethics of Care, University of Humanistic Studies, Utrecht, 3National Multiple Sclerosis Foundation, Rotterdam, 4Department of Community and Occupational Medicine, University Medical Center Groningen, University of Groningen, Groningen, 5MS4 Research Institute, Nijmegen, 6Section Health, Medical and Neuropsychology, Department of Psychology, Leiden University, Leiden, the Netherlands Background: The adherence to treatment with injectable disease-modifying drugs (DMDs) in multiple sclerosis (MS) may benefit from adequate information provision and management of expectations. The communication between patients and physicians is very important in this respect. The current study investigated the perspectives and experiences of the MS patients and neurologists concerning the choice and course of treatment with DMDs in the Netherlands.Methods: The MS patients (aged 18–60 years; diagnosed with MS at least a year ago, currently treated with injectable DMD treatment) and MS-specialized neurologists (practicing for ≥3 years, treating ≥15 MS patients/month on average, and spending >60% of their time in clinical practice) were asked to complete semistructured Internet-based questionnaires. The neurologists in this study were not necessarily the treating neurologists of the participating MS patients.Results: In all, 107 MS patients and 18 MS-specialized neurologists completed the questionnaires. The MS-specialized neurologists in this study reported discussing most of the suggested treatment goals with their patients. The MS patients indicated that certain important treatment goals, ie, reduction in disease progression, reduction or prolongation of time to long-term disability, and reduction in new magnetic resonance imaging lesions, were not discussed with them. More than one-quarter of the patients (27%) would appreciate more information about their treatment. We found evidence for suboptimal patient adherence to MS therapy (23% indicated taking a treatment break) due to diverse side effects, lack of efficacy, or practical issues. As compared to these patient reports, the scale of poor adherence was overestimated by more than half of the neurologists (on average, 30% estimated treatment breaks).Conclusion: The MS patients and MS-specialized neurologists in this study differ in their experiences and perspectives on information provision and adherence to DMDs. Education programs and up-to-date information on MS treatments for both neurologists and patients may be helpful in improving patient involvement and patient–physician communication. Keywords: multiple sclerosis, disease-modifying treatment, opinion, adherenc