Perceptions and experiences of multiple sclerosis patients regarding out-of-pocket costs of care discussions

Background and Purpose: Multiple sclerosis (MS) is a costly disease and out-of-pocket (OOP) cost information is difficult to obtain. We seek to characterize the perceptions and experiences of MS patients regarding out-of-pocket (OOP) costs of care discussions and evaluate factors associated with them. Materials and Methods: MS patients visiting an outpatient neurology clinic 7/2018-2/2019 were approached to complete a survey regarding costs of care discussions. Logistic regression analyses were performed to identify factors associated with patient preferences in discussing OOP costs with their provider and actions to contact insurance company to inquire about OOP costs. Results: A total of 243 patients responded (response rate 43.5%). With regard to perceptions, 85.3% of patients expressed interest in knowing about OOP costs, 59.6% reported desire specifically for their healthcare provider to discuss OOP costs, and 18.5% reported that there have been times they wanted to discuss OOP costs but did not have the opportunity to do so. With regard to experiences, 20.5% reported discussing costs with their providers in the past three months, 15.5% contacted their insurance company regarding OOP costs, and 10.6% received a call from an imaging center to inform them of OOP costs. Patients who were male, white, or had at least one relapse were significantly more likely to desire to discuss OOP costs with their provider. No factors were significantly associated with patients contacting their insurance company regarding OOP costs. Conclusion: Most MS patients would like to discuss costs of care with their providers, but only one in five actually do so. Medical practices can take initiatives towards providing transparency in OOP costs.