Survey Of Women With Disabilities Finds Many Health-Care Needs Unmet In Traditional Settings

May 12, 1998

NEW ORLEANS -- One of the first assessments of the health status of women with disabilities, conducted by University at Buffalo faculty members, has spurred formation of a one-of-a-kind multidisciplinary health-care center for women with disabilities, where physicians provide neurologic, gynecologic and preventive care under one roof.

The health-needs assessment was conducted by the Women's Health Collaborative Research Group, which aimed to develop a wellness model of women-centered care that met the requirements of women with chronic disabling conditions.

Results showed that more than 20 percent of these women experience reproductive and post-menopausal health problems that often are not treated adequately within a traditional system designed for people who are fully functional.

More than 300 women with multiple sclerosis (MS), stroke or other neurologic disorders completed the survey. Half of the women, who had a median age of 45, were moderately to severely disabled. Analysis showed that more than 20 percent reported a history of gynecologic problems, such as uterine fibroids, endometriosis, ovarian cysts, irregular menstrual periods and deterioration of MS during menstruation.

Forty percent were sexually inactive and 70 percent of the post-menopausal women were not taking hormone replacement therapy.

Respondents reported experiencing insensitivity to their special health-care needs; lack of accessible medical equipment, such as examination tables and mammography machines, and difficulty getting to the several facilities required for different problems.

Carol Brownscheidle, Ph.D., UB clinical research scientist and director of the Center for Women with Disabilities, will present results of the survey and discuss the center here today (May 12,1998) at the American College of Obstetricians and Gynecologists' annual clinical meeting. Dennis M. Weppner, M.D., UB associate professor of gynecology and obstetrics, is co-author.

"The health concerns of many women with disabilities often are not met through the traditional health-care delivery system," said Brownscheidle. "People don't think of these women in the context of wellness: They think of them only in terms of their disease.

"If they have limited movement, they can't use the stirrups on a conventional pelvic-exam table. Perhaps they can't stand upright for mammography screening. If they are spastic, they can't do breast exams. Getting to different specialty offices is difficult."

Brownscheidle said that in many cases involving women who have MS, post-stroke impairment, post-polio paralysis, cerebral palsy, spinal-cord injury, spina bifida or movement disorders such as Parkinson's disease, the neurologist is the gatekeeper for health care.

"We've built on that, and formed a kind of one-stop health shopping center. When women come in for stroke treatment or follow-up visits for multiple sclerosis, they can go to the next room for a pelvic exam and pap test, another room for a mammogram, and then have their blood pressure checked."

The Center for Women with Disabilities, which opened in September, uses equipment adapted to the capabilities of women with disabilities. Nurse practitioners present programs on issues such as nutrition and osteoporosis. Monthly "focus luncheons" bring in specialists to answer questions on health topics in an informal setting.

While improving health remains the primary agenda -- Brownscheidle says the goal is to survey 1,000 women eventually -- the center has branched out to address broader, quality-of-life issues. It offers programs on community-service opportunities, networking, social services and careers. The Outdoor Adventure program offers wilderness wheelchair hikes, and the Women Helping Women program links women with disabilities with volunteer opportunities in assisted-living settings and nursing homes.

The center is part of the Western New York Neuroscience Center, located in The Buffalo General Hospital, where the survey was conducted. It has attracted the attention of several health-care organizations, including the New York State Health Department and the Mayo Clinic, which will send representatives to Buffalo to visit the clinic later this month.

Brownscheidle was invited to discuss the center at the Women's Health Issues in Multiple Sclerosis conference in Houston in March, and will moderate another conference on Amelia Island this June on the same issue, based on the survey findings and the center's work.

University at Buffalo

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