Health-related quality of life among African Americans with multiple sclerosis.

OBJECTIVE: Identify factors associated with health-related quality of life (HRQOL) among African Americans with multiple sclerosis (MS). DESIGN: A survey cohort was recruited from the Registry of the North American Research Committee On Multiple Sclerosis (NARCOMS) Project. Data were collected from 131 African Americans with MS, with 111 participants providing all data needed for analyses of physical domains and 103 participants providing all data needed for analyses of mental health domains of HRQOL using multiple linear regression models. RESULTS: Worsening MS symptoms and greater interference of MS symptoms with daily life were associated with significantly lower physical domains of HRQOL. Respondents reporting that their principal care physician who had a greater understanding of how MS symptoms affected their daily lives tended to have significantly higher physical dimensions of HRQOL. A previous diagnosis of depression and agreement that participants were sometimes embarrassed in public due to their MS were associated with significantly lower mental health aspects of HRQOL. CONCLUSION: Findings highlight the importance of the positive association between the level of understanding by the principal care physician of how MS symptoms affect the lives of African Americans and their physical dimensions of HRQOL. Physicians treating African Americans with MS need to understand how MS symptoms impact the life of these patients as a key component to providing culturally competent care.

Comparisons of Latinos, African Americans, and Caucasians with multiple sclerosis.

OBJECTIVE: Identify racial/ethnic differences among people with multiple sclerosis (MS) in demographics, MS disease characteristics, and health services received. PARTICIPANTS: We analyzed enrollment data from the Registry of the North American Research Committee on Multiple Sclerosis (NARCOMS) Project to compare 26,967 Caucasians, 715 Latinos, and 1,313 African Americans with MS. DESIGN: Racial/ethnic analyses of NARCOMS data focused on descriptive characteristics, using ANOVA and chi-square tests to identify significant differences in means and frequencies among Caucasians, Latinos, and African Americans. RESULTS: We identified significant racial/ethnic differences in demographics, MS disease characteristics, and treatments. Caucasians were older when first MS symptoms were experienced (30.1 years) and at MS diagnosis (37.4 years) than Latinos (28.6 years and 34.5 years) or African Americans (29.8 years and 35.8 years). Larger proportions of Latinos reported normal function for mobility and bladder/bowel function compared to Caucasians. Larger proportions of Latinos (44.2 percent) and African Americans (45.8 percent) reported at least mild depression compared to only 38.7 percent of Caucasians. Larger proportions of Latinos never received mental health care or care from rehabilitation specialists than Caucasians or African Americans. A larger proportion of African Americans had never been treated by a neurologist specializing in MS and a smaller proportion of African Americans received care at a MS clinic than Caucasians or Latinos. CONCLUSIONS: Our findings highlight the need for future analyses to determine if age, disease duration, MS symptoms, and disability levels provide additional insights into racial/ethic differences in the use of MS-related providers.

Perceptions of informal care givers: health and support services provided to people with multiple sclerosis.

PURPOSE: About 30% of people with multiple sclerosis (MS) need some form of home care assistance, with 80% of that assistance provided by informal or unpaid care givers. This study focuses on the care givers to 530 more disabled people with MS, with the objective to learn more about informal care giving to people with greater dependency and need for assistance. METHOD: The data presented in this study were collected in a national survey of 530 informal care givers to people with MS who have greater levels of physical dependency. RESULTS: About 70% of informal care givers responded that assisting the person with MS perform daily activities or personal care took up the largest amount of their care giving time. Care givers also reported a range of home and community-based services that would make care giving easier or improve the care provided. However, informal care givers generally reported low satisfaction with health insurance coverage of these services, especially coverage by health maintenance organizations and other managed care plans. CONCLUSIONS: Lack of health insurance coverage of needed home and community-based services can reduce the quality of informal care provided, as well as increase the burden of informal care giving.

Informal care giving to more disabled people with multiple sclerosis.

PURPOSE: About 30% of the people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid care givers. This study focusses on the care givers for 530 more disabled people with MS, with the objective of learning more about informal care giving to people with greater dependency and need for assistance. METHOD: The data presented in this study were collected in a national survey of 530 people who provided informal care to more disabled people with MS. RESULTS: Almost half of these care givers reported that they provided more than 20 h of care per week to the person with MS, with more than 9 in 10 shopping for groceries, doing indoor housework, preparing meals or providing transportation for the person with MS. More than 4 in 10 employed care givers reduced the amount of time worked in the previous 12 months because of their care giving responsibilities. Although more than half of the MS care givers in our study reported that care giving was demanding, time consuming or challenging, about 90% of these MS care givers were happy that they could help. About two in three of these MS care givers found that care giving was rewarding, with more than 8 in 10 proud of the care they provided. CONCLUSIONS: More than a quarter of the informal care givers to people with MS thought they would benefit from treatment or counselling provided by mental health professionals. Not only it is necessary to provide access to mental health services for people with MS, but it is also important to assure that their informal care givers also have access to appropriate mental health care, given the scope of their care giving responsibilities.

Urban/rural differences in the use of physician services by people with multiple sclerosis.

OBJECTIVE: to identify any urban/rural differences among people with multiple sclerosis (MS) in the utilization of physician services and MS-focused care, as well as differences in patient perceptions of access and quality. METHOD: data were collected by surveying 1,518 people with MS throughout the United States, equally divided among urban, urban-adjacent rural areas, and more remote rural areas. Standard SAS procedures were used to analyze the results. RESULTS: significantly larger proportions of people with MS in rural areas had a family or general practitioner as their primary physician while a significantly larger proportion of people with MS in urban areas had a neurologist as their primary physician. Rural residents traveled significantly greater distances to receive MS-focused care than their urban counterparts. People with MS living in more remote rural areas averaged less satisfaction with their access to a neurologist and to MS-focused care, and less satisfaction with the quality of care received, than people with MS in urban areas. CONCLUSION: limited availability of MS specialists in rural areas, and greater travel time and distance required to receive care from these providers, present future challenges to providing appropriate and high quality MS-focused care to people living with MS in rural areas.

Urban/rural differences in access and barriers to health care for people with multiple sclerosis.

CONTEXT: People living in rural areas face barriers when seeking health care, often experiencing difficulties accessing health providers or facilities. Little is known about barriers to the use of health care confronting people with multiple sclerosis (MS) in rural areas. PURPOSE: To identify any rural/urban differences in access and barriers to health services, including MS-focused care, among people with MS. METHODS: The data were collected in a survey of 1,518 people with MS living in all 50 States. The study included three geographic subgroups: urban areas; adjacent rural areas; and more remote rural areas. FINDINGS: We found significant rural/urban differences in access and barriers to care among people with MS, especially for MS-focused care. Significantly smaller proportions of people with MS from adjacent and more remote rural areas reported no difficulty getting MS-related care than their urban counterparts. CONCLUSIONS: Greater difficulty accessing MS-related care experienced by people with MS in rural areas has negative implications for the quality of the MS care they receive.

Health-related quality of life among Latinos with multiple sclerosis.

This study identifies characteristics associated with health-related quality of life (HRQOL) among Latinos with multiple sclerosis (MS). Data were collected from 99 Latinos with MS, with multiple linear regression models utilized to analyze these data. Marital status, MS symptoms, depressive symptoms, treatment at MS clinics, and satisfaction with insurance coverage of MS-related care were significantly linked with physical HRQOL. Marital status, employment, access to MS-focused care, and need for mental health care were significantly associated with mental health dimensions of HRQOL. Identifying characteristics associated with better HRQOL among Latinos with MS should facilitate approaches that address the health needs of this community.

A pilot study of Latinos with multiple sclerosis: demographic, disease, mental health, and psychosocial characteristics.

In this study the authors present results from a survey of 99 Latinos with multiple sclerosis (MS), including demographic, disease, and mental health characteristics. Four in 10 respondents reported depressive symptoms; half thought they had more worries than other people due to their MS; and about 29 % thought they needed mental health care in the past year. Whereas 76 % of respondents were highly satisfied with their access to MS-focused care, only 61% were highly satisfied with their access to mental health care. These findings highlight the role of mental health and social services in the comprehensive care needed by Latinos with MS.

A pilot study of young adults with multiple sclerosis: demographic, disease, treatment, and psychosocial characteristics.

BACKGROUND: Although multiple sclerosis (MS) is the most common neurologic disease disabling younger adults, very little is known about the characteristics of young adults with MS and the impact of MS on their lives. OBJECTIVES: To conduct a pilot study of the demographic, disease, treatment, and psychosocial characteristics of young adults with MS (aged 18 and 31 years). METHODS: We solicited participation from all 452 members of the Registry of the North American Research Committee On Multiple Sclerosis (NARCOMS) Project aged 18 to 31 years, collecting data from 100 of these young adults (22%) by computer-assisted telephone interviews. Data included basic demographic, disease, and treatment characteristics, ratings of satisfaction with access to and quality of MS and mental health care, and beliefs about the impact of MS on their current and future lives. RESULTS: Participants were 93% female and averaged 28.6 years of age, and 88% had relapsing-remitting MS. Forty-three percent received the majority of their MS-focused care at an MS clinic and 94% had seen a neurologist in the previous 12 months. More than 40% reported depressive symptoms at the time of the survey. These young adults with MS had relatively low rates of concern about the impact of MS in the present but higher rates of worry about their future. CONCLUSIONS: These findings suggest the need for a study with a larger, representative sample of young adults with MS to guide development of programs, interventions, and services tailored to meet their needs.

Age-related comparisons of people with multiple sclerosis: demographic, disease, and treatment characteristics.

OBJECTIVE: To determine if the demographic characteristics and health care needs of younger people with MS differ from older people with MS. PARTICIPANTS: The study analyzed enrollment data from the NARCOMS Registry to compare 1,987 younger adults with MS (30 years and younger) to 29,245 other adults with MS (over 30 years). METHODS: Analyses of the NARCOMS data focused on descriptive characteristics of these adults with MS, using a t-test to identify any statistically significant age-related differences in means and a chi-squared test to identify any statistically significant age-related differences in proportions. RESULTS: A significantly larger proportion of younger adults with MS were female and African American compared to other adults with MS. We found significant age-related differences in the expression of physical disability domains but few significant age-related differences in symptoms of depression. We also observed significant age-related differences in the utilization of health providers, with larger proportions of other adults with MS treated by internists, urologists, rehabilitation specialists, and physical and occupational therapists. CONCLUSIONS: The comprehensive care of younger adults with MS should include monitoring for mental health conditions and the availability of mental health services.