title: The evaluation of the health care needs of women with disabilities.
abstract: There are 27 million disabled women in the United States. These women face many unique challenges in accessing medical care and frequently report an insensitivity to their specific health care needs. Disabled women also have a wide array of health-related issues, including multiple concurrent medical disorders, psychosocial issues, and socioeconomic concerns. Their overall experience is that of a fragmented health care delivery system that often is inadequate in many important areas such as reproductive health, post-reproductive health, sexuality, etc.In order to address these issues, the departments of neurology and gyn/ob formed a multidisciplinary Women's Health Collaborative Research Group (WHCRG). Its mission is to develop a wellness model of comprehensive women-centered care that meets the special health care requirements of women with chronic disabling conditions. The Women's Health Issues Survey is a 72-item self-report needs assessment that was administered to over 300 women with multiple sclerosis, stroke, and other neurologic disorders. The results of the survey were critical to the planning and implementation of a center for women with disability.Approximately 50% of the women (median age 45 years) were moderately to severely disabled, as measured by the Kurtzke Expanded Disability Status Scale. Over 20% of those surveyed reported a history of uterine fibroids, endometriosis or ovarian cysts, irregular menstrual periods, and deterioration of their neurologic condition (eg, multiple sclerosis) during menstruation. Forty percent were sexually inactive. Seventy percent of the postmenopausal cohort were not taking hormone replacement therapy.The ability to identify and survey a representative sample of disabled women and develop a database linking demographic, physical disability, economic, and health care access information is a key step in implementing a cross-functional approach toward improving the level and scope of health care for disabled women.
authors.affiliation: Department of Gynecology and Obstetrics, State University of New York at Buffalo, The Buffalo General Hospital, New York, Buffalo, USA
authors.initials: DM
authors.lastname: Weppner
authors.initials: CM
authors.lastname: Brownscheidle