Health Care Opportunities and Threats: Addressing Health Disparities in Minority Communities
Multiple Sclerosis Disparities in US Minority Populations · PDF fileMultiple Sclerosis...
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Multiple Sclerosis Disparities in US Minority Populations Developed based on data published in Neurology Clinical Practice (April 2015; vol. 5, no. 2), an official journal of the American Academy of Neurology THE CAUSE OF MS IS UNKNOWN but risk factors may include: i MULTIPLE SCLEROSIS (MS) – an immune-mediated disorder of the central nervous system – affects approximately: 400,000 PEOPLE IN THE US i AFRICAN AMERICANS with MS may: HISPANIC AMERICANS with MS may: Have a higher Multiple Sclerosis Severity Score (MSSS) compared with Caucasians iv,v Be older at disease onset and experience a more aggressive disease course, resulting in an increased risk for disability Be more likely to experience optic neuritis, transverse myelitis, and low levels of vitamin D, conditions that can be considered risk factors for MS Be diagnosed with MS at a younger age with a potential for increased risk for disability at an earlier age PREVALENCE OF MS IN MINORITY POPULATIONS of all MS literature – 136 out of nearly 60,000 articles total – focuses on minority populations LESS THAN 1% CULTURAL AND SOCIOECONOMIC FACTORS MAY IMPACT MS MANAGEMENT AND QUALITY OF CARE vi Minority patients may have difficulty accessing and utilizing specialty care because of barriers such as: LACK OF EDUCATION ON RESOURCES AND TREATMENT vi POOR COMMUNICATION WITH THEIR PHYSICIAN OR DIFFICULTY FINDING RESOURCES WRITTEN IN THEIR PRIMARY LANGUAGE vii Due to underrepresentation of minorities in MS clinical trials, limited data exist on treatment approaches and effectiveness HOW TO HELP ADDRESS THE NEEDS OF MINORITY PATIENTS WITH MS REFERENCES i Munoz-Culla M, Irizar H, Otaegui D. The genetics of multiple sclerosis: review of current and emerging candidates. Appl Clin Genet 2013;6:63-73 ii Buchanan R, Huang C. Health-related quality of life among informal caregivers assisting people with multiple sclerosis. Disabil Rehabil 2011;33:113-121 iii Amezcua L, Lund BT, Weiner LP, Islam T. Multiple sclerosis in Hispanics: a study of clinical disease expression. Mult Scler 2011;17:1010–1016 iv Cree BA, Reich DE, Khan O, et al. Modification of multiple sclerosis phenotypes by African Ancestry at HLA. Arch Neurol 2009;66:226-233 v Roxburgh RH, Seaman SR, Masterman T, et al. Multiple Sclerosis Severity Score: using disability and disease duration to rate disease severity. Neurology 2005;64:114-1151 vi Shabas D, Heffner M. Multiple sclerosis management for low-income minorities. Mult Scler 2005;11:635-640 vii Sperandeo K, Nogrady L, Moreo K, Prostko CR. Managed approaches to multiple sclerosis in special populations. J Manag Care Pharm 2011;17:S1-19; quiz S20-11 Reduce clinical disparities via data generation Enhance external resources and partner with patient advocacy groups to better reach underserved communities Improve internal awareness of these disparities and offer education for Biogen employees to enhance the services offered for MS patients Findings by Omar Khan, M; Mitzi J. Williams, MD; Lilyana Amezcua, MD; Adil Javed, MD, PhD; Kristin E. Larsen, PhD; Jennifer M. Smrtka, NP APRIL 2015 FCH-US-0714 DIFFERENCES IN MS DISEASE CHARACTERISTICS IN MINORITY POPULATIONS DEVELOP EDUCATIONAL RESOURCES AND MATERIALS FOR MINORITY MS PATIENTS CULTIVATE PATIENT TRUST BY IMPROVING PHYSICIAN AND PATIENT COMMUNICATION PROMOTE RESEARCH AND CLINICAL TRIAL PARTICIPATION Improve MS outcomes among racial and ethnic minority populations in the US GENETIC PREDISPOSITION ENVIRONMENT GENDER Minority racial and ethnic groups in the U.S. have a higher incidence of MS than people in their ancestral countries of origin, but data on their experiences are limited iii CHALLENGES TO PROVIDING OPTIMAL TREATMENT FOR MINORITY POPULATIONS TO BETTER SUPPORT PEOPLE LIVING WITH MS, BIOGEN IS LAUNCHING THE MS UNDERSERVED POPULATIONS (MS-UP) INITIATIVE TO HELP: LIMITED INSURANCE, INCOME, EDUCATION, LANGUAGE, AND COMPUTER LITERACY 2.3 MILLION WORLDWIDE ii Religious beliefs and societal distrust may also be barriers to participation in clinical trials STUDY FUNDING: Biogen convened a steering committee to share knowledge about and experiences with minority patients with MS, resulting in the development of the content of the Neurology Clinical Practice article. Biogen paid committee members to attend the meeting and provided funding for editorial support. Biogen reviewed the manuscript and provided feedback on the manuscript to the authors. The authors had full editorial control of the manuscript and provided their final approval of all content.
Transcript of Multiple Sclerosis Disparities in US Minority Populations · PDF fileMultiple Sclerosis...
Multiple Sclerosis Disparitiesin US Minority Populations Developed based on data published in Neurology Clinical Practice (April 2015; vol. 5, no. 2), an official journal of the American Academy of Neurology
THE CAUSE OF MS IS UNKNOWNbut risk factors may include:i
MULTIPLE SCLEROSIS (MS) – an immune-mediated disorder of the central nervous system – affects approximately:
400,000PEOPLE IN THE USi
AFRICAN AMERICANS with MS may:
HISPANIC AMERICANS with MS may:
Have a higher Multiple Sclerosis Severity Score (MSSS) compared with Caucasiansiv,v
Be older at disease onset and experience a more aggressive disease course, resulting in an increased risk for disability
Be more likely to experience optic neuritis, transverse myelitis, and low levels of vitamin D, conditions that can be considered risk factors for MS
Be diagnosed with MS at a younger age with a potential for increased risk for disability at an earlier age
PREVALENCE OF MS IN MINORITY POPULATIONS
of all MS literature – 136 out of nearly 60,000 articles total – focuses on minority populations
LESSTHAN 1%
CULTURAL AND SOCIOECONOMIC FACTORS MAY IMPACT MS MANAGEMENT AND QUALITY OF CAREvi
Minority patients may have difficulty accessing and utilizing specialty care because of barriers such as:
LACK OF EDUCATION ON RESOURCESAND TREATMENT vi
POOR COMMUNICATION WITH THEIR PHYSICIAN OR DIFFICULTY FINDING RESOURCES WRITTEN IN THEIR PRIMARY LANGUAGE vii
Due to underrepresentation of minorities in MS clinical trials,limited data exist on treatment approaches and effectiveness
HOW TO HELP ADDRESS THE NEEDS OF MINORITY PATIENTS WITH MS
REFERENCES i Munoz-Culla M, Irizar H, Otaegui D. The genetics of multiple sclerosis: review of current and emerging candidates. Appl Clin Genet 2013;6:63-73 ii Buchanan R, Huang C. Health-related quality of life among informal caregivers assisting people with multiple sclerosis. Disabil Rehabil 2011;33:113-121 iii Amezcua L, Lund BT, Weiner LP, Islam T. Multiple sclerosis in Hispanics: a study of clinical disease expression. Mult Scler 2011;17:1010–1016 iv Cree BA, Reich DE, Khan O, et al. Modification of multiple sclerosis phenotypes by African Ancestry at HLA. Arch Neurol 2009;66:226-233 v Roxburgh RH, Seaman SR, Masterman T, et al. Multiple Sclerosis Severity Score: using disability and disease duration to rate disease severity. Neurology 2005;64:114-1151 vi Shabas D, Heffner M. Multiple sclerosis management for low-income minorities. Mult Scler 2005;11:635-640 vii Sperandeo K, Nogrady L, Moreo K, Prostko CR. Managed approaches to multiple sclerosis in special populations. J Manag Care Pharm 2011;17:S1-19; quiz S20-11
Reduce clinical disparitiesvia data generation
Enhance external resources and partner with patient advocacy groups to better reach underserved communities
Improve internal awareness of these disparities and offer education for Biogen employees to enhance the services offered for MS patients
Findings by Omar Khan, M; Mitzi J. Williams, MD; Lilyana Amezcua, MD; Adil Javed, MD, PhD; Kristin E. Larsen, PhD; Jennifer M. Smrtka, NP
APRIL 2015
FCH-US-0714
DIFFERENCES IN MS DISEASE CHARACTERISTICS IN MINORITY POPULATIONS
DEVELOP EDUCATIONAL RESOURCES AND MATERIALS FOR MINORITY MS PATIENTS
CULTIVATE PATIENT TRUSTBY IMPROVING PHYSICIANAND PATIENT COMMUNICATION
PROMOTE RESEARCH AND CLINICAL TRIAL PARTICIPATION
Improve MS outcomes among racial and ethnic minority populations in the US
GENETICPREDISPOSITION
ENVIRONMENT GENDER
Minority racial andethnic groups in the U.S.have a higher incidence
of MS than people in their ancestral countries
of origin, but data on their experiences
are limitediii
CHALLENGES TO PROVIDING OPTIMAL TREATMENT FOR MINORITY POPULATIONS
TO BETTER SUPPORT PEOPLE LIVING WITH MS, BIOGEN IS LAUNCHING THE MS UNDERSERVED POPULATIONS (MS-UP) INITIATIVE TO HELP:
LIMITED INSURANCE, INCOME, EDUCATION, LANGUAGE, AND COMPUTER LITERACY
2.3 MILLIONWORLDWIDEii
Religious beliefs and societal distrust
may also be barriers to participation in clinical trials
STUDY FUNDING: Biogen convened a steering committee to share knowledge about and experiences with minority patients with MS, resulting in the development of the content of the Neurology Clinical Practice article. Biogen paid committee members to attend the meeting and provided funding for editorial support. Biogen reviewed the manuscript and provided feedback on the manuscript to the authors. The authors had full editorial control of the manuscript and provided their final approval of all content.
