Marcia Finlayson, PhD, OTR/L, MSCS–Associate Professor, Department of Occupational Therapy, University of Illinois at Chicago

Introduction
There are approximately 400,000 people with multiple sclerosis (MS) in the US, and it has been estimated that 45% of them are over the age of 55 (Minden, Marder, Harrold, & Dor, 1993). For most people with MS, current knowledge suggests that they can expect to live as long as their age peers (Weinshenker, 1995). Over the past several years, Dr. Marcia Finlayson and her team at the University of Illinois at Chicago have been studying issues related to aging with MS. Two of these projects have included NARCOMS registrants. The first study is entitled Aging With MS: Unmet Needs in the Great Lakes Region, which was funded by a Health Care Delivery and Policy Research Contract from the National Multiple Sclerosis Society (NMSS) from 2002 to 2005. The second study is entitled Addressing Concerns about Falling Among Older Adults With MS. It is funded by the Retirement Research Foundation. Both of these studies will be described briefly, and key findings of potential interest to NARCOMS registrants will be shared.

Aging With MS: Unmet Needs in the Great Lakes Region Study
The specific goals of this study were to identify the unmet health-related service needs of people aging with MS in the Great Lakes Region and describe the factors associated with these needs. For the purpose of the project, the Great Lakes Region included the states of Minnesota, Wisconsin, Illinois, Indiana, and Michigan. Throughout the study, the research team received advice and feedback from a Study Advisory Group made up of people with MS, caregivers, and health care professionals. These individuals played a critical role in ensuring the data collection procedures and instruments were sensitive to the issues and concerns of people aging with MS and their family members.

To address the study goals, data were gathered between September 2002 and October 2004 through focus groups, telephone interviews with people with MS (PwMS), and telephone interviews with caregivers. Participants for the focus groups were recruited through the NMSS Chapters in each participating state. In total, 51 individuals participated in seven different focus groups held across the region in the fall of 2002. Analysis of the focus group data indicated that health promotion programs(both physical and social), community accessibility, and support to remain at home were the most commonly identified health-related service needs. Findings from this portion of the project have already been published (Finlayson, Van Denend, & Shevil, 2003).

The findings of the focus group were used to guide the development of the telephone interview guides for the people with MS and the caregivers. The PwMS interviews were conducted first. Participants were recruited through direct mailing to individuals registered with the NMSS, the NARCOMS database, and through advertising. In total, 1,282 PwMS completed a telephone interview. One hundred and two of them were recruited from NARCOMS, and these participants had an average of 69 years old (range: 65-80). Across all of the participants, the average age was 64 years old (range: 45-90).

The interviews collected information on a wide-range of factors including basic demographics and social situations, MS symptoms, activity limitations, use of assistive technology, and the use of and need for health-related services. In the services section of the interview, participants were asked about their current use of services, the frequency of service use, their perceived needs for services, and factors that might be associated with need (e.g., income, insurance status). The services most likely to have been used at least once since MS diagnosis in order to promote health and well-being included neurologist (99%), health insurance (99%), family doctor (88%), optometrist or ophthalmologist (81%), religious services (70%), physical therapist (66%), and MS support groups (65%). The services least likely to have been used since diagnosis included dietician (13%) and meal programs (14%).

Although people often will use a service once, the research team also explored whether people continued to use services once they were initiated. Findings indicated that the services most likely to continue to be used by PwMS to maintain health and well-being included health insurance (99%), religious services (92%), family doctor (91%), transportation services (86%), and optometrist or ophthalmologist (85%). Of particular interest was the finding that 20% of PwMS discontinued seeing a neurologist over time. The services that were most likely to be initiated and then discontinued were occupational therapy (91%), physical therapy (87%), dietician (87%), and mental health professional (70%). These findings may partially be explained by the fact that many PwMS see these health professionals only if there is a specific problem in their lives rather than for maintenance therapy and services. This is likely due to the difficulty in obtaining insurance coverage for maintenance therapy.

Finally, the research team also examined unmet need for services. Many factors can contribute to services needs being unmet. First, a person might have used a service in the past (e.g., physical therapy) and recognize that they need the service again. Second, a person might have a specific concern that could be addressed by a particular service and therefore report need. Finally, a person might be using a service and be dissatisfied with the quality or outcomes of the services received. All of these different potential sources of unmet need were considered when the data were analyzed for this project. Table 1 shows the top unmet needs across the age groups included in the study.

Although the study Aging With MS: Unmet Needs in the Great Lakes Region officially ended in December 2005, Dr. Finlayson and her research team continue to analyze the data and prepare papers and presentations to share with PwMS, family members, and other members of the health research community. The NMSS Chapters involved in the study have also begun to use the findings to think about programming and advocacy efforts to pursue. In addition, using the data from the caregiver interviews, which have not been discussed here, Dr. Finlayson’s team has begun working on a MS caregiver education program to address the challenges and training needs that were uncovered from those interviews. Another area that the research team is working on relates to falls among older adults with MS, which leads to the next study with which NARCOMS registrants were involved.

Addressing Concerns About Falling Among Older Adults With MS

As many readers will know, falls are a serious public health problem among older adults. Advancing age and neurological disease, such as MS, are key risk factors for falling. In addition, many MS symptoms that negatively affect mobility (e.g., fatigue, loss of balance, weakness, spasticity, etc.) also correspond to fall risk factors. These risk factors include: having a chronic health condition, experiencing balance problems and weakness, taking multiple medications, and experiencing incontinence. Nevertheless, there is little research available to help rehabilitation professionals develop evidence-based interventions to prevent falls among PwMS. Preliminary data from the study Aging with MS: Unmet Needs in the Great Lakes Region found that 54% of older adults with MS had experienced a fall to the ground at some point in the six months before their interviews. In addition, 62% were concerned about falling, and 70% were curtailing activity in case they might fall. Based on these findings, Dr. Finlayson’s research team decided to purse a study to investigate concerns about falls among people aging with MS. The project is funded by the Retirement Research Foundation, and will be completed in August 2007.

The falls study has three phases. The first phase involved telephone interviews with a national random sample of PwMS aged 55+ who were recruited through the NARCOMS Registry. We invited 700 people to participate, and 354 completed the interview process. Participants had an average age of 67 years (range: 55-94), were two-thirds female, and had MS for an average of 22 years (range: 1-62). Ninety-one percent of the people we interviewed had fall that they felt was related to their MS at some point since their diagnosis. Of particular concern was the finding that 30% of the people we interviewed reported falling at least once per month, and of these people 26% reported falling at least twice per week. Half of the participants had experienced a fall that was serious enough to warrant medical attention.

As part of the interview, we asked participants to tell us the story of their most recent fall in their own words. We asked about where they fell, why they think it happened, whether or not they were injured, and how they managed to get back up. We heard a wide-range of stories. We found that 60% of falls described had occurred in the participants’ own house, while 21% had occurred in the community (e.g., in a store or restaurant, at church). The remaining falls occurred on the participants’ property, but not in the house (15%), and 4% of falls happened as people were moving from inside to outside their homes. The most common explanations people provided for why they fell included poor balance in combination with environmental hazards, lower extremity problems (e.g., ‘my legs gave out’) during a transfer, poor balance and not concentrating on walking, and encountering an environmental hazard when using a mobility device.

At this point, the research team is well into the analysis phase, and has begun to work on the second and third phases of the study. The second phase involves the development of a falls prevention education program specific to people with MS. Over the next several months testing of this program will begin in the Chicago, Illinois area. This testing phase will be the third part of the project. We will keep you posted on the results of this study as they become available.

Dr. Finlayson and the members of her research team would like to extend a special thanks to the NARCOMS registrants for their involvement in these two studies, and for contributing to the growing knowledge of the issues and concerns of people aging with MS. The findings of these studies will help in the development of programs and advocacy efforts to improve the quality of life of people with MS as they age.

References
Finlayson, M., Van Denend, T., Shevil, E. (2003). Multiple perspectives of the health service need, use and variability among older adults with multiple sclerosis. Occupational Therapy in Health Care, 17, 5-25.

Minden, S. L., Marder, W. D., Harrold, L. N., Dor, A. (1993). Multiple sclerosis - A statistical portrait: A compendium of data on demographics, disability, and health services utilization in the United States. Cambridge, MA: Abt Associates Inc.

Weinshenker, B. (1995). The natural history of multiple sclerosis. Neurologic Clinics of North America, 13, 119-146.

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