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Small grants, big goals: innovative research program focuses on MS care and quality of life.


Launched by the Society two years ago, a trail-breaking grant program for people with multiple sclerosis is moving into high gear. Called "Small Grants in Health Services Research" (HSR), this is one of several grant programs administered by the Society's Research and Medical Programs Department. It provides short-term funding for studies of hospital and medical care, as well as methods of improving home health care, housing, employment, day care, rural health, insurance, and family support systems.

Believed to be the only one of its kind in any voluntary health agency, the program is now supporting 15 projects around the country.

HSR evolved as people with MS became more knowledgeable and vocal about the care they were getting or -- more to the point -- not getting. As Dr. Robert Enteen, director of health research and policy programs, puts it, "Throughout its history the Society has focused, reasonably, on biomedical research. Obviously, nothing is as important as finding the cause of and cure for multiple sclerosis. We have, however, some 250,000 Americans who have the disease now; they and their families are affected by it every day of their lives. What they're saying to us is, get us home care, open up health insurance, help relieve our caregivers, tend to our employment and social needs.'"

Dr. Stephen Reingold, vice president, Research and Medical Programs Department, points out that "HSR is an important component of a truly comprehensive research approach to MS," complementing the biomedical research grants program by illuminating service delivery and quality-of-life problems and testing out solutions for them.

Unlike the more familiar biomedical grants, HSR grants are relatively small, with funds covering only up to one year of research. Thus, they are used generally for start-up phases of larger projects.

For instance, a Rochester, New York study group under Drs. Margaret Wineman and Ruth O'Brien was awarded an HSR grant to determine the willingness of people with advanced MS to use three types of long-term care services: a community-based residence, a day care center, and a respite program for their caregivers.

This grant grew out of the pressing need to investigate the problems inherent in institutional living. Some 12,000 people with MS -- many under 50 years old -- now live in nursing homes. Many of them do not need the battery of services available in those institutions and could do with far less if they had better support at home or in the community. The Rochester investigators interviewed 102 people with MS in their homes and talked to 50 caregivers as well. The people with MS, most of them needing a fair amount of ambulatory assistance or using a wheelchair, were asked about their functional ability and activities of daily living: could they shop, cook, do laundry, manage transportation?

In turn, caregivers were asked whom they could rely on for their own emotional support, guidance, and advice on home management. Were there people to socialize with? How much of a burden was caregiving proving to be? Both groups were asked about their preferences in long-term care services.

"The upshot of all their answers," Dr. Wineman said, "was that people with MS clearly want to avoid going into a nursing home. Their first choice is a day center, primarily because they don't want to be separated from their families. The majority said they would use such a center. Their next choice is a community residence, so long as it doesn't have the ambiance of an institution.

"Based on these findings we envision a four-phase plan. The first phase would be a day program that people will gravitate to. We'll need an esthetically pleasing environment that provides a range of wellness and support services for the person with MS.

"The second phase would be a limited-stay sleep-in program for people with MS, to provide more extended respite for their caregivers than would be available through the day center.

"The third phase would be shared apartments which would include a 'shared aide' concept that has been pioneered in the Rochester area. And the final phase would be a 'living center,' that is, a skilled nursing facility for those who need one. We have to start by getting fund for the day center, and marshalling community and business support for the effort," she concluded.

The entire Rochester project was undertaken in collaboration with the Rochester Area Chapter of the Society, and the chapter reports that two area hospitals have already approached it to help develop each of the four phases.

Dr. Wineman notes, "The sad thing is that we completed interviewing in January, and nine of our interviewees are already institutionalized, eight of them because of some disturbance with the family caregiver. They might well have been able to avoid long-term institutionalization had these alternatives been available to help them with services they needed."

Some people disabled with MS do indeed live at home with the services of a paid personal care attendant. There are problems inherent in this arrangement. Attendants may be insensitive, inadequately trained, and not intent on long-term employment. Burn-out is a serious caregiver problem.

Paul Levy, who heads the Coalition for Independence in Kansas City, Missouri and who has MS himself, is using an HSR grant to design and test a system whereby people with MS who need personal care attendants will be able to get and keep good ones. He and a colleague, Dr. Christine Rinck, are developing and testing a program for recruiting, training and placing personal care attendants who will be able to work successfully with individuals with MS. The ultimate goal is to set up and maintain an affordable, flexible pool of attendants so that people with MS and other diabilities can live in their own homes rather than in institutions.

On the other side of the coin, it is the burden carried by the dedicated caregiver that preoccupies Dr. Marci Catanzaro, associate professor of nursing at the University of Washington in Seattle, who has spent the last 10 years interviewing families living with long-term illness. "It became very obvious that many caregivers are desperately in need of some support," she told INSIDE MS. "Many caregivers are placebound -- they need to talk to someone and can't get out of their homes to go to a traditional counseling setting. Either they live in a rural area, or their responsibilities keep them tied to the house. Over and over again, I hear them saying they wish they could talk to somebody who understands what they're going through."

In her HSR grant Dr. Catanzaro is exploring the feasibility of group counseling for caregivers via the telephone. She and her team are taping telephone discussions with caregivers, trying to help them cope. The caregivers are then contacted later and asked whether they have been satisfied with the counseling, whether it's changed their behavior or morale, whether it's had an effect on other family members, and how useful it is generally. The project is only a few months old, so much remains to be done.

The Seattle investigator is trying to develop a scientific method of quantifying the results of telephone counseling. "What we need is hard information that shows changes that have occurred, and a comparison with a matched group that has not had telephone counseling. We're working on this now." Her findings in this grant will be used to explore the possibility of third-party reimbursement for telephone counseling.

Just getting health insurance coverage can be a major obstacle for people with MS. It is especially hard for them to obtain long-term care coverage. Even those with very mild cases are discouraged from applying for it and are automatically turned down if they do.

This situation sparked the interest of Dr. Martin Jones of Gaithersburg, Maryland, an economist whose wife Ilajean has benign MS. "But it wasn't my wife who galvanized me into action," he reveals. "About five years ago the National Capital Chapter in Washington, DC referred a couple to me. Although the man had been diagnosed with MS 15 years before, he and his wife ran their own retail establishment, working 50 to 60 hours a week. Yet because of his diagnosis, no insurer wanted to talk to him about long-term case insurance. Moreover, the couple was forced to pay approximately $7,000 a year for basic health insurance. This seemed exorbitant. We all know that substantial numbers of people with MS remain benign for their lives; yet insurance companies treat MS as a monolithic disease."

What Dr. Jones is doing under his HSR grant is preliminary fact-finding concerning general health, personal activities, and use of health services for people with mild MS.

"I am convinced that within the next five years America will have some kind of plan available to people--maybe backed by a consortium of public and private parties--to provide long-term care insurance. what I want to do is lay a foundation of facts that will help determine more accurately the insurance risk that people with mild MS represent to insurers." In order to address the question conclusively, much subsequent research, using different methods, will be required.

On behalf of Dr. Jones the Society put an announcement in INSIDE MS asking for volunteers who had had mild MS for 10 years or more. Jones got more than 1,100 responses; of these, 1,000 were sent a questionnaire. In six weeks Dr. Jones received responses from 91% of them--something of a record, he notes. They were asked about their general health, medical conditions other than MS, how independently they could function, whether they were employed, and how necessary to their lives they considered family or community support. The data have not yet been evaluated.

"If someday we could negotiate long-term care insurance for people with mild MS, this might serve as a springboard for an effort to get similar coverage for those with moderate MS," he notes.

Though HSR grants are generally awarded to applicants who originate the project ideas, the Society may consider a particular research issue of such priority that it cannot wait for an application to be submitted. So the Society will go out and contract with an investigator to do the assigned job. Recently such a project was awarded as a contract to Abt Associates, Inc., a research and consulting firm in Cambridge, Massachusetts. Dr. Sarah Minden, a Harvard Medical School clinician, is directing the project. The aim: to compile and analyze all existing MS data that are not biomedical in nature. This is information that is already available but is scattered throughout published articles, books, unpublished reports, and data bases.

"There are many reports in the literature on demographics, health care use, economics, psychology and sociology--all related in whole or in part to multiple sclerosis," says the Society's Dr. Enteen. "We must get at these data and organize them in order to use them. We need to know all about people with MS, what they need, what services they are getting, where the services are falling short. Who is paying for them? How can we improve services and funding? It may be that no one has ever pulled MS data from some large file. Or maybe they just looked at the data from one angle. Dr. Minden will be looking at the information anew."

How will this be used? "The information will strengthen every aspect of Society work," Dr. Enteen says. "For example, for advocacy, the more you can say about your population and its needs and where the system is falling short, the more chance you have to influence government actions. This is particularly true in view of the many advocacy opportunities that will result from the new Americans with Disabilities Act.

"or services planning, if the Society wants to apportion resources to meet some need, first it has to collect information. Our public relations people need to be able to respond to questions from the media such as, what is the divorce rate among people with MS? How often are there problems with children? With parents of patients? With housing? Employment? These are the kinds of data we are collecting to enable us to answer questions about who our people are, what their current circumstances are, and what changes are needed to improve those circumstances."

All the information collected by Dr. Minden and her associates at Abt, as well as data from HSR grantee reports, will be entered into the Society's computer system. The final Abt report, due next year, will take the form of an MS fact book which will be a compendium of information on all the epidemiological and psychosocial aspects of MS. It will be available to researchers, educators, advocates, physicians, the media and lay persons.

An important point about the Health Services Research program, says Dr. Enteen, is that, "although many of us recognize these problems as so obvious they seem to need no research, one can only influence policy if hard data are available to support one's position. Moreover, it is always possible that some things that seem obvious yield unexpected results when studied." Dr. Enteen also points out that the Society's HSR projects can have value for other diseases and disability groups as well. "Often their problems are the same as those of our constituents."

Dr. Enteen comments finally, "We are on the verge of some big changes in health care and funding in this country. cPeople are predicting that within five years America will have some sort of national health insurance system; even the private sector agrees this is needed. The question is, what should it look like--particularly for people with disabilities? If the Society can be in the forefront, with a battery of information and hard data to illuminate these issues we can have an important influence on government and private sector policies. This is our hope for this innovative new Society program."
COPYRIGHT 1990 National Multiple Sclerosis Society
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Title Annotation:includes list of projects funded as of 6/7/90; National Multiple Sclerosis Society's "Small Grants in Health Care Research"
Author:Shaw, Phyllis
Publication:Inside MS
Date:Sep 22, 1990
Previous Article:You can change things more easily than you think: accessibility in your community.
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