Study Suggests Need for Further Research on Understanding the MS Experience of Hispanics/Latinos (1) - National Multiple Sclerosis Society

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Study Suggests Need for Further Research on Understanding the MS Experience of Hispanics/Latinos

March 15, 2012

Findings from a study of Hispanics/Latinos with MS call attention to the need to better understand unique characteristics of MS in this population and the need for more accessible and culturally relevant mental health and social services. Researchers found that a sample of Hispanics/Latinos with MS reported more pain, fatigue, cognitive problems, mental health problems, and dissatisfaction with their access to mental health care than the general MS population, when approximate comparisons were made reviewing data from the Sonya Slifka Longitudinal MS Study. This study by Robert J. Buchanan, PhD, (Mississippi State University) and collaborators was supported by a Pilot Research Award from the National MS Society, and was published in the Journal of Social Work in Disability & Rehabilitation (2011;10:211-231).

Background: While MS is more common in countries at northern latitudes and in Caucasians with northern European ancestry, MS affects most ethnic groups, including Hispanic and Latino populations. Ensuring that Hispanics/Latinos with MS receive culturally competent care and access to necessary services requires understanding how the disease is experienced in this population. Previous studies found that ethnic minorities are at greater risk for depression and poor mental health, and less likely to receive adequate care for these problems. Investigations like this study are necessary so that Hispanics/Latinos with MS can get care and support services targeted to their specific needs.

The Study: Recruitment letters were sent to 686 Hispanics/Latinos who were enrolled in the North American Research Committee on MS patient registry. A total of 99 Hispanics/Latinos with MS agreed to participate in a telephone interview including questions on demographics; symptoms and disease characteristics; physician services; mental health status; MS-related feelings and experiences; and a standard Health-related Quality of Life survey. Researchers compared these findings to similar data from 2000 people with MS who enrolled in the Sonya Slifka Longitudinal MS Study.

In several areas, results from this pilot study matched those from the Slifka Study. The demographics of the two groups were similar, including gender ratios, average age, education, and marital status. Fewer Hispanic/Latino respondents were employed; 33% compared to 44% in the Slifka Study. The type of MS was similar in both groups, although Hispanics/Latinos were younger at disease onset and at diagnosis.

There also appears to be disparities in symptoms. For instance, 94% of the Hispanics/Latinos in the pilot study said fatigue had an impact on their daily activities, while 83% of the Slifka Study respondents reported fatigue as a symptom. Hispanics/Latinos also reported experiencing more pain (73% vs. 54%) and cognitive problems (83% vs. 56%).

Other differences between the two groups involved emotional and mood problems, access to mental health care, and quality of life factors. Depressive symptoms were reported by 44% of the Hispanic/Latino respondents, somewhat higher than the 38% incidence of emotional or mood problems in the Slifka Study. (Note: questions in the two studies were asked differently so these are approximate comparisons.) However, while 98% of participants in the Slifka Study had no difficulty accessing mental health care, only 61% of Hispanics/Latinos with MS were highly satisfied with their access to this kind of care. In contrast, 76% of the Hispanics/Latinos surveyed were highly satisfied with their access to other MS care.

Investigators compared Health-Related Quality of Life scores from this study with a sample of the general U.S. population that had been reported in a previous study. Hispanics/Latinos demonstrated worse scores related to physical function, pain, and general health. The degree to which physical and emotional problems limited the ability of these Hispanics/Latinos to function socially and to perform daily activities and roles was also greater greater than the general U.S. population.

Comment: Providing adequate MS care across the cultural and socioeconomic spectrum means understanding how each group experiences and perceives the disease and identifying the factors that limit access to care. This study points out important factors that warrant further study, since, compared to a broad national sample of people with MS, the Latinos in the study reported more pain, fatigue, cognitive problems, mental health problems, and dissatisfaction with their access to mental health care. The authors recommend more support for vocational and social skills to improve function and quality of life in these areas.

The National MS Society’s Hispanic/Latino Advisory Council advises the Society on strategies and programs to overcome cultural barriers and make resources more available to this community. Read more about this council and about Hispanics/Latinos with MS.

About Multiple Sclerosis

Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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