Longitudinal changes of financial hardship in patients with multiple sclerosis


      • A high proportion of patients with multiple sclerosis experience financial hardship.
      • Cost-related care non-adherence in multiple sclerosis accumulates over time.
      • Patients’ financial worry correlates with cost-related care non-adherence.
      • Clinical practices should focus on screening those at risk for financial hardship.
      • Interventions should focus on mitigating costs of care and improving outcomes.



      : To measure the longitudinal changes in three domains of financial hardship (i.e., financial worry, cost-related care non-adherence, material hardship) in patients with MS.


      : A convenience sample of 559 adult patients with a known diagnosis of MS visiting a single outpatient neurology clinic between July 2018 to February 2020 were approached. Patients completed surveys at baseline and 3, 6, 9, and 12 months post-enrollment. Outcomes included financial worry (using Comprehensive Score for Financial Toxicity Patient-Reported Outcome (COST)), cumulative cost-related care non-adherence, and cumulative financial hardship as adopted by Medical Expenditure Panel Survey (MEPS). Associations of financial worry with care non-adherence and material hardship were assessed using ANOVA.


      : A total of 242 (43.3%) participated at baseline. Mean age was 43.6 ± 13.6 years (76.9% female; 46.4% White); median months from diagnosis was 63 (IQR, 28–120). The mean COST score at enrollment was 17.43 (± 10.15) and increased to 19.41 (± 11.12) at 12 months (p = 0.09). Cumulative cost-related MS care non-adherence increased from 32.6% at baseline to 53.3% at 12 months (20.7% increase; p <0.001). Cumulative material hardship increased from 61.6% at baseline to 76.0% at 12 months (14.4% increase; p<0.001). Changes in COST score from baseline to 12 months were significantly associated with changes in non-adherence and material hardship (p<0.01).

      Conclusion and relevance

      : Cost-related care non-adherence and material hardship accumulate progressively over time and correlates with financial worry. Clinical practices should focus on screening those at risk and intervene with the goal of mitigating costs of care and improving patient outcomes.


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