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Financial burdens may impact treatment adherence and QOL for patients with MS

By Adriene Marshall

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Patients with multiple sclerosis (MS) and a history of relapse are at high risk for financial toxicity. Financial toxicity – defined as anxiety about money issues, medical debt, and use of maladaptive coping mechanisms – can lead to nonadherence to treatment and lower health-related quality of life (HRQOL), according to Gelareh Sadigh, MD, and colleagues. Their article was published online Aug. 18 in the Multiple Sclerosis Journal.


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Dr. Sadigh and colleagues point out that most patients with MS are unable to work because of physical disability within 10 years of diagnosis, and thus experience a decrease in income. Yet the cost of health care services for patients with typically exceeds $4 million over a lifetime. Included in these costs are disease-modifying therapies, which have become more expensive over the past 10 years, and advanced imaging tests, which tend to have comparatively high out-of-pocket costs.

“We believe efforts to improve financial toxicity and outcomes among MS patients should be complemented by educational resources to enhance patients’ self-belief in their own capacity to manage personal finances and develop strategies to cope with the financial strains of MS,” said Dr. Sadigh, assistant professor in the department of radiology and imaging sciences at Emory University, Atlanta. “Our data will guide clinicians to modify clinical practices to enhance shared decision-making and improve discussions of costs with patients when planning treatment strategies. Whether cost communication alone can mitigate financial toxicity is uncertain. However, it is likely that early engagement of patients with costs might prevent behavioral alterations detrimental to care quality.”

Dr. Gelareh Sadigh

Overall, 34.7% of patients reported nonadherence to treatment because of financial concerns.

Determining altered behaviors

Patients with MS who were age 18 years or older from a single outpatient neurology clinic were recruited for the study between July 2018 and February 2019. Receiving treatments through participation in a clinical trial (which thereby eases financial burden) was among the exclusion criteria.

Participants who were included in the analysis (n = 243) filled out a paper survey that took about 15 minutes to complete. Among the assessment tools was the modified Comprehensive Score for Financial Toxicity Patient-Reported Outcome (COST) instrument, which was previously validated to assess cancer patients.

The survey also assessed HRQOL and alterations in lifestyle to compensate for financial lack, such as decreased spending on food, clothing, or leisure; withdrawal from savings accounts; and increased use of credit cards. Care-altering coping behaviors also were assessed and defined as foregoing imaging tests and nonadherence to medications because of the costs. For patients who received their MS diagnosis more than 3 months before study entrance, information on disease severity and disease type (i.e., relapsing remitting, primary or secondary progressive) was obtained. Patients were also asked about demographics, health insurance, financial self-efficacy as measured by the Financial Self-Efficacy Scale, and health literacy.

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Coping difficulties

Almost all patients included in the analysis (99.6%; mean age, 43.6 years; mean time from diagnosis, 90.9 months) had health insurance. A total of 86.9% had relapsing remitting MS, 8.3% had primary progressive, and 4.8% had secondary progressive. About 56% of patients reported decreased income following their MS diagnosis, with 37% of these patients reporting a decrease of more than 20%.

Based on COST scores, 75.6% of participants reported some degree of financial toxicity. A total of 67% of patients acknowledged using one or more coping strategies to deal with financial hardship, with 50.4% spending less on leisure activities, 40.2% withdrawing money from savings accounts, and 34.8% spending less on basic expenses.

Overall, 34.7% of patients reported nonadherence to treatment because of financial concerns. Of these patients, the most common type of nonadherence was delay in filling prescriptions, reported by 26.9% of patients. About 13% of patients did not submit to the recommended imaging tests. The most common reasons for nonadherence to care were denial of coverage by insurance in 30.1% of cases and inability to afford imaging in 21.8% of patients. Through use of the patient-reported outcomes measurement information system, below-average physical and mental HRQOL was found in 76.8% and 36.2% of patients, respectively.

Crossing racial/socioeconomic lines

Previous studies have shown that African Americans are more likely to relapse and to have more severe disability, compared with White patients, the authors noted. However, they cautioned against conflating race – or income – with financial toxicity.

“One of the goals of research is to identify factors independently associated with financial toxicity and to do so, it is important to include the full range of social determinants of health, which includes race and income, among many other factors,” said Dr. Sadigh. “In our study, while race and income individually were associated with financial toxicity, these effects did not persist in our multivariable analysis. Therefore, misattributing financial toxicity to race or income will be misleading in focusing interventions/solutions needed to address the problem.”