Bonnie J. Chakravorty

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.

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.

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.

Demographic and Disease Characteristics of People With Multiple Sclerosis Living in Urban and Rural Areas

This study compares demographic and disease-related characteristics of people with multiple sclerosis (MS) living in urban and rural areas. The data analyzed for this study were collected from a survey of 1518 people with MS living throughout the United States from October 2004 through January 2005. We found significant urban-rural differences in various MS characteristics, including type of MS. A significantly larger proportion of people with MS in remote rural areas than their urban counterparts responded that they had primary progressive MS. People with MS in rural areas were significantly more likely than those in urban areas to report that MS symptoms interfered with their independence. A significantly larger proportion of people with MS in remote rural areas than in urban areas were not receiving disease-modifying medications. Our results suggest that MS disease expression varies across urban-rural gradients. Although the findings are not definitive, we hope that other investigative groups will buil...

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.

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.