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

Abstract

BackgroundManaging 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.MethodsA 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.ResultsA 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.ConclusionSeveral 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.

Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: A combined perspective from the MS in the 21st Century Steering Group

“…The consequences of patients not engaging with their own healthcare are, not surprisingly, borne most heavily by the patients themselves and their families, and include emotional, physical, social and financial implications (Rieckmann et al, 2015). Patients have better health outcomes when involved in their own healthcare; motivated patients show improved treatment adherence, reduced risk factors and improved health outcomes (Rieckmann et al, 2015;Tintoré et al, 2016). A shared decision-making approach between HCPs and PwMS is essential for patient-centred care.…”

“…In line with the early views of HIV/AIDS patients and advocates, both PwMS and HCPs believe that collaborative interactions are required to fully understand and address the complex issues involved in MS, and to improve future care; a collective patient-HCP voice is a positive and powerful one. Although a patient-centred approach in MS has started to emerge in the literature (Ballesteros et al, 2017;Col et al, 2017;Colligan et al, 2017) there is still a lack of recognition of the importance of a shared PwMS-HCP perspective in MS care (Tintoré et al, 2016).…”

Challenges in physician-patient communication for optimal management of systemic sclerosis-associated interstitial lung disease: a discourse analysis

“…Conversely, less participation than the patient wanted was associated with a higher level of regret regarding treatment decisions. Similar findings have been reported in patients with multiple sclerosis (MS) in terms of their choice of disease-modifying therapy [27]. Negative communication experiences have led to some patients with MS perceiving their neurologists as having little interest in their day-to-day ongoing difficulties and stress [28,29].…”

Evaluation of a Novel Preference Assessment Tool for Patients with Multiple Sclerosis

“…Other studies demonstrated differences between physicians' assumptions about what their patients preferred and patient-stated preferences. [16][17][18] That the tool helped patients understand their own treatment goals and preferences and generated an accurate summary that could be shared with clinicians suggests that this simple approach to preference elicitation may prove helpful in promoting SDM in clinical settings, although further testing is needed. The present finding that preserving brain health was more important than either disability concerns or avoiding relapses is consistent with other studies.…”