Original article| Volume 45, 102344, October 2020

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


      • 85.3% of MS patients would like to know about OOP treatment costs.
      • 59.6% of MS patients would like to discuss OOP costs with their providers.
      • Only 20.5% of MS patients discuss OOP costs with their providers.
      • Only 15.5% of MS patients inquire about expected OOP costs through their insurer.
      • Providers should take an active role in making cost of care information more accessible to patients.


      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.


      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.


      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.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Multiple Sclerosis and Related Disorders
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Wallin MT
        • Culpepper WJ
        • Campbell JD
        • et al.
        The prevalence of MS in the United States: a population-based estimate using health claims data.
        Neurology. 2019; 92: e1029-e1e40
        • Cree BAC
        • Hauser SL
        Jameson JL Fauci AS Kasper DL Hauser SL Longo DL Loscalzo J McGraw-Hill Education, New York, NY2018
        • Owens GM.
        Economic burden of multiple sclerosis and the role of managed sare organizations in multiple sclerosis management.
        Am. J. Manag. Care. 2016; 22: s151-s158
        • Kobelt G
        • Berg J
        • Atherly D
        • Hadjimichael O
        Costs and quality of life in multiple sclerosis: a cross-sectional study in the United States.
        Neurology. 2006; 66: 1696-1702
        • Rosenkrantz AB
        • Sadigh G
        • Carlos RC
        • Silva 3rd, E
        • Duszak Jr., R
        Out-of-pocket costs for advanced imaging across the us private insurance marketplace.
        J. Am. Coll. Radiol.: JACR. 2018; 15: 607-614
        • Paul AB
        • Oklu R
        • Saini S
        • Prabhakar AM
        How much is that head CT? Price transparency and variability in radiology.
        J. Am. Coll. Radiol.: JACR. 2015; 12: 453-457
        • Arora V
        • Moriates C
        • Shah N
        The challenge of understanding health care costs and charges.
        AMA J. Ethics. 2015; 17: 1046-1052
        • Sadigh G
        • Carlos RC
        • Krupinski EA
        • Meltzer CC
        • Duszak Jr., R
        Health care price transparency and communication: implications for radiologists and patients in an era of expanding shared decision making.
        AJR Am. J. Roentgenol. 2017; 209: 959-964
        • Tierney WM
        • Miller ME
        • McDonald CJ
        The effect on test ordering of informing physicians of the charges for outpatient diagnostic tests.
        New Engl. J. Med. 1990; 322: 1499-1504
      1. Services USCfMM. CY 2020 hospital outpatient prospective payment system (OPPS) policy changes: hospital price transparency requirements (CMS-1717-F2). Baltimore, MD2019.

        • Alexander GC
        • Casalino LP
        • Meltzer DO
        Patient-physician communication about out-of-pocket costs.
        JAMA. 2003; 290: 953-958
        • Vijayasarathi A
        • Duszak Jr., R
        • Gelbard RB
        • Mullins ME
        Knowledge of the costs of diagnostic imaging: a survey of physician trainees at a large academic medical center.
        J. Am. Coll. Radiol.: JACR. 2016; 13: 1304-1310
      2. Sadigh G, Lava N, Switchenko J, Duszak R, Krupinski E, Meltzer C, Hughes D, Carlos C. Patient reported financial toxicity in multiple sclerosis: predictors and association with neuroimaging and medication non-adherence. Mult. Scler. J.2020(In press).

        • Filippi M
        • Rocca MA
        • Ciccarelli O
        • et al.
        MRI criteria for the diagnosis of multiple sclerosis: MAGNIMS consensus guidelines.
        Lancet Neurol. 2016; 15: 292-303
        • McDonald WI
        • Compston A
        • Edan G
        • et al.
        Recommended diagnostic criteria for multiple sclerosis: guidelines from the international panel on the diagnosis of multiple sclerosis.
        Ann. Neurol. 2001; 50: 121-127
        • Lown J.
        Development and validation of a financial self-efficacy scale.
        J. Financ. Counsel. Plann. 2011; 22
        • Hartung DM
        • Bourdette DN
        • Ahmed SM
        • Whitham RH
        The cost of multiple sclerosis drugs in the US and the pharmaceutical industry: too big to fail?.
        Neurology. 2015; 84: 2185-2192
        • Claxton G
        • Rae M
        • Panchal N
        Consum. Asset. Patient Cost Shar. 2017; 2 (Available at:) (Accessed on Oct)
        • Alexander GC
        • Casalino LP
        • Tseng CW
        • McFadden D
        • Meltzer DO
        Barriers to patient-physician communication about out-of-pocket costs.
        J. Gen. Intern. Med. 2004; 19: 856-860
        • Ubel PA
        • Zhang CJ
        • Hesson A
        • et al.
        Study of physician and patient communication identifies missed opportunities to help reduce patients' out-of-pocket spending.
        Health Aff. (Millwood). 2016; 35: 654-661
      3. Ungar L, O'Donnel J.Dilemma over deductibles: costs crippling middle class. Available at: Accessed on September20, 2017.

        • Claxton G
        • Rae M
        • Panchal N
        • Whitmore H
        • Damico A
        • Kenward K
        Health benefits in 2014: stability in premiums and coverage for employer-sponsored plans.
        Health Aff. (Millwood). 2014; 33: 1851-1860
        • Boulware LE
        • Cooper LA
        • Ratner LE
        • LaVeist TA
        • Powe NR
        Race and trust in the health care system.
        Public Health Rep. 2003; 118: 358-365
        • Crow R
        • Gage H
        • Hampson S
        • et al.
        The measurement of satisfaction with healthcare: implications for practice from a systematic review of the literature.
        Health Technol. Assess. 2002; 6: 1-244
        • Sewell AA.
        Disaggregating ethnoracial disparities in physician trust.
        Soc. Sci. Res. 2015; 54: 1-20
        • Hamid MS
        • Kolenic GE
        • Dozier J
        • Dalton VK
        • Carlos RC
        Breast health services: accuracy of benefit coverage information in the individual insurance marketplace.
        J. Am. Coll. Radiol. 2017; 14 (e5): 482-487
        • Newman D
        • Parente ST
        • Barrette E
        • Kennedy K
        Prices for common medical services vary substantially among the commercially insured.
        Health Aff. (Millwood). 2016; 35: 923-927
        • Sadigh G
        • Gallagher K
        • Obenchain J
        • et al.
        Pilot feasibility study of an oncology financial navigation program in brain cancer patients.
        J. Am. Coll. Radiol. 2019; 16: 1420-1424
        • Shankaran V
        • Leahy T
        • Steelquist J
        • et al.
        Pilot feasibility study of an oncology financial navigation program.
        J. Oncol. Pract. 2018; 14: e122-e1e9
        • Sherman DE.
        Transforming practices through the oncology care model: financial toxicity and counseling.
        J. Oncol. Pract. 2017; 13: 519-522