The state of multiple sclerosis: current insight into the patient/health care provider relationship, treatment challenges, and satisfaction

Abstract

Background: Managing multiple sclerosis (MS) treatment presents challenges for both patients and health care professionals. Effective communication between patients with MS and their neurologist is important for improving clinical outcomes and quality of life.

Methods: A closed-ended online market research survey was used to assess the current state of MS care from the perspective of both patients with MS (≥18 years of age) and neurologists who treat MS from Europe and the US and to gain insight into perceptions of treatment expectations/goals, treatment decisions, treatment challenges, communication, and satisfaction with care, based on current clinical practice.

Results: A total of 900 neurologists and 982 patients completed the survey, of whom 46% self-identified as having remitting-relapsing MS, 29% secondary progressive MS, and 11% primary progressive MS. Overall, patients felt satisfied with their disease-modifying therapy (DMT); satisfaction related to comfort in speaking with their neurologist and participation in their DMT decision-making process. Patients who self-identified as having relapsing-remitting MS were more likely to be very satisfied with their treatment. Top challenges identified by patients in managing their DMT were cost, side effects/tolerability of treatment, and uncertainty if treatment was working. Half of the patients reported skipping doses, but only 68% told their health care provider that they did so.

Conclusion: Several important differences in perception were identified between patients and neurologists concerning treatment selection, satisfaction, expectations, goals, and comfort discussing symptoms, as well as treatment challenges and skipped doses. The study results emphasize that patient/neurologist communication and patient input into the treatment decision-making process likely influence patient satisfaction with treatment.

Keywords: health care provider survey; multiple sclerosis; patient survey; patient-health care provider relationship; treatment expectations; treatment satisfaction.

Conflict of interest statement

Mar Tintoré received consulting and non-CME service fees from Almirall, Biogen, EMD Merck Serono, Genzyme, Novartis, Roche, Sanofi-Aventis, and Teva UK Limited; educational/research support from Bayer HealthCare, Biogen, Genzyme, EMD Merck Serono, Novartis Pharma AG, and Teva UK Limited. Martin Duddy received honoraria, educational support, consulting fees, and research support from Bayer HealthCare, Biogen, Genzyme, Merck Serono, Novartis Pharma AG, Roche, and Teva UK Limited; and personal compensation as associate editor for the Multiple Sclerosis Journal. David E Jones received consulting fees from Biogen, Genzyme, and Novartis; and research support from Biogen. Nancy Law received consulting fees from Biogen in her current role; no consulting fees were received in her former role as an employee of the National Multiple Sclerosis Society (Denver, CO, USA). Gilmore O’Neill is a full-time employee of and holds stock/stock options in Biogen. Antonio Uccelli received consulting or speaker fees from Allergan, Bayer HealthCare, Biogen, Genzyme, Merck Serono, Novartis, Roche, and Teva; and research support from Biogen, Merck Serono, and Novartis. Robert Weissert received consulting fees from Biogen, Genzyme, Merck Serono, Novartis, Roche, and Teva; served on speakers bureaus for Ärztlicher Kreisverband Weiden and Biogen; and performed contracted research for Novartis. Sibyl Wray received consulting fees from Acorda, Biogen, EMD Serono, Genzyme, Novartis, Questcor, and Teva; served on speakers bureaus for Acorda, Bayer HealthCare, Biogen, EMD Serono, Genzyme, Novartis, Questcor, and Teva; and performed contracted research for Biogen, EMD Serono, Genzyme, Novartis, Receptos, and Roche. The authors report no other conflicts of interest in this work.

Figures

Figure 1

(A) Participation in DMT decision making and (B) satisfaction of patients with DMT. Notes: (A) Qualified patients with MS who had taken prescription medications responded to the question, “How much input did you have in choosing your current/past disease-modifying medication(s), compared to your health care provider?” (B) n=463 patients with MS who were currently taking prescription medication responded to the question, “Overall, how satisfied are you with your current disease-modifying multiple sclerosis medication(s)?” The other category includes PPMS, progressive relapsing multiple sclerosis, and other/not sure. aIndicates RRMS significantly different from SPMS and other, or SPMS and other significantly different from RRMS (P<0.05). bPlease note small base size; results should be interpreted as directional in nature. Total may exceed 100% due to rounding. Abbreviations: DMT, disease-modifying therapy; HCP, health care provider; MS, multiple sclerosis; PPMS, primary progressive multiple sclerosis; RRMS, relapsing-remitting multiple sclerosis; SPMS, secondary progressive multiple sclerosis.

Figure 2

Top challenges for managing disease-modifying therapies for MS. Notes: n=643 qualified patients with MS who had taken prescription medicines responded to the question, “What are the greatest challenges you face in managing your disease-modifying multiple sclerosis treatment?” n=900 neurologists responded to the question, “What do you feel are the greatest challenges your patients face in managing their disease-modifying multiple sclerosis treatment?” The 7 of 15 most frequently selected items by both patients and neurologists are shown. The percentage of respondents selecting each option is indicated as a data label for each bar. Abbreviation: MS, multiple sclerosis.