Small grants, big goals: innovative research program focuses on MS care and quality of life - National Multiple Sclerosis Society's "Small Grants in Health Care Research" - includes list of projects funded as of 6/7/90

Inside MS, Fall, 1990 by Phyllis Shaw

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."