Relapse prevalence, symptoms, and health care engagement: patient insights from the Multiple Sclerosis in America 2017 survey

Comprehensive data on the costs of multiple sclerosis is sparse. We conducted a survey of 606 persons with MS who were members of the National Multiple Sclerosis Society to obtain data on their cost of personal health services, other services, equipment, and earnings. Compensation of such cost in the form of health insurance, income support, and other subsidies was measured. Survey data and data from several secondary sources was used to measure costs incurred by comparable persons without MS. Based on the 1994 data, the annual cost of MS was estimated at over $34 000 per person, translating into a conservative estimate of national annual cost of $6.8 billion, and a total lifetime cost per case of $2.2 million. Major components of cost were earnings loss and informal care. Virtually all persons with MS had health insurance, mostly Medicare/Medicaid. Health insurance covered 51 per cent of costs for services, excluding informal care. On average, compensation for earnings loss was 27 per cent. MS is very costly to the individual, health care system, and society. Much of the cost (57 per cent) is in the form of burdens other than personal health care, including earnings loss, equipment and alternations, and formal and informal care. These costs often are not calculated.

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PNL20 DISEASE SEVERITY AND HEALTH CARE COSTS OF RELAPSING-REMITTING MULTIPLE SCLEROSIS IN PORTUGAL

Value in Health ◽

10.1016/s1098-3015(10)67559-6 ◽

2005 ◽

Vol 8 (6) ◽

pp. A134

Author(s):

C Mateus ◽

J Pereira

Keyword(s):

Multiple Sclerosis ◽

Health Care ◽

Disease Severity ◽

Health Care Costs ◽

Relapsing Remitting ◽

Remitting Multiple Sclerosis ◽

Relapsing Remitting Multiple Sclerosis ◽

Care Costs

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Limited English Proficiency and Disparities in Health Care Engagement Among Patients With Breast Cancer

JCO Oncology Practice ◽

10.1200/op.20.01093 ◽

2021 ◽

pp. OP.20.01093

Author(s):

Mohana Roy ◽

Natasha Purington ◽

Mina Liu ◽

Douglas W. Blayney ◽

Allison W. Kurian ◽

...

Keyword(s):

Breast Cancer ◽

Health Care ◽

Clinical Trial ◽

Genetic Counseling ◽

English Proficiency ◽

Primary Language ◽

Patient Portal ◽

Language Groups ◽

English Speaking ◽

Health Care Engagement

PURPOSE: Race and ethnicity have been shown to affect quality of cancer care, and patients with low English proficiency (LEP) have increased risk for serious adverse events. We sought to assess the impact of primary language on health care engagement as indicated by clinical trial screening and engagement, use of genetic counseling, and communication via an electronic patient portal. METHODS: Clinical and demographic data on patients with breast cancer diagnosed and treated from 2013 to 2018 within the Stanford University Health Care system were compiled via linkage of electronic health records, an internal clinical trial database, and the California Cancer Registry. Logistic and linear regression models were used to evaluate for association of clinical trial engagement and patient portal message rates with primary language group. RESULTS: Patients with LEP had significantly lower rates of clinical trial engagement compared with their English-speaking counterparts (adjusted odds ratio [OR], 0.29; 95% CI, 0.16 to 0.51). Use of genetic counseling was similar between language groups. Rates of patient portal messaging did not differ between English-speaking and LEP groups on multivariable analysis; however, patients with LEP were less likely to have a portal account (adjusted OR, 0.89; 95% CI, 0.83 to 0.96). Among LEP subgroups, Spanish speakers were significantly less likely to engage with the patient portal compared with English speakers (estimated difference in monthly rate: OR, 0.43; 95% CI, 0.24 to 0.77). CONCLUSION: We found that patients with LEP had lower rates of clinical trial engagement and odds of electronic patient portal enrollment. Interventions designed to overcome language and cultural barriers are essential to optimize the experience of patients with LEP.

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Quantifying Differences in Health Care Consumption for the Management of Multiple Sclerosis Within Privately and Publicly Insured Health Care Programs

Journal of Managed Care & Specialty Pharmacy ◽

10.18553/jmcp.2016.22.12.1385 ◽

2016 ◽

Vol 22 (12) ◽

pp. 1385-1391 ◽

Cited By ~ 4

Author(s):

Terrie Livingston ◽

Monica Fay ◽

Ravi Iyer ◽

Wendy Wells ◽

Michael W. Pill

Keyword(s):

Multiple Sclerosis ◽

Health Care ◽

Health Care Consumption ◽

Publicly Insured

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Health, disability, and life insurance experiences of working-age persons with multiple sclerosis

Multiple Sclerosis Journal ◽

10.1177/1352458506071356 ◽

2007 ◽

Vol 13 (4) ◽

pp. 534-546 ◽

Cited By ~ 21

Author(s):

LI Iezzoni ◽

L. Ngo

Keyword(s):

Multiple Sclerosis ◽

Health Care ◽

Health Insurance ◽

Life Insurance ◽

College Education ◽

Employment Decisions ◽

Public Programs ◽

Considerable Difficulty ◽

Telephone Interviews ◽

Working Age

Working-age Americans with multiple sclerosis (MS) may face considerable financial insecurities when they become unable to work and lack the health, disability, and life insurance typically offered through employers. In order to estimate the rates of having these insurance policies, as well as how insurance status affects reports of financial stress, we conducted half-hour telephone interviews with 983 working-age persons across the US, who reported being diagnosed with MS. The interviews occurred from May through November 2005, and among the sampled individuals contacted and confirmed eligible, 93.2% completed the interview. The study population was largely female (78.9%), Caucasian (86.4%), married (68.6%), with at least some college education (71.5%), and unemployed (60.2%). Overall, 96.3% had some health insurance (40.3% with public health insurance, primarily Medicare), 56.7% had long-term disability insurance (36.4% with public programs), and 68.3% had life insurance. Notably, 27.4% indicated that, since being diagnosed with MS, health insurance concerns had significantly affected employment decisions. In addition, 16.4% reported considerable difficulty paying for health care, 27.4% put off or postponed seeking needed health care because of costs, and 22.3% delayed filling prescriptions, skipped medication doses, or split pills because of costs. Overall, 26.6% reported considerable worries about affording even basic necessities, such as food, utilities, and housing. Multiple Sclerosis 2007; 13: 534-546. http://msj.sagepub.com

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