4292.0: Tuesday, October 23, 2001 - Board 9

Abstract #29036

Women's General Health and Wellness: An Educational Program for Women with Bleeding Disdorders

Ann D. Forsberg, MPH, New England Hemophilia Center, UMass Memorial Hospital, 119 Belmont Street, Worcester, MA, (508) 334-6047, forsbera@ummhc.org, Susan Cutter, MSW, MPA, University of Pennsylvania Health System, Maura Malone, RN, Hemophilia Center, Dartmouth Hitchcock Medical Center, 1 Medical Drive, Lebanon, NH, Regina B. Butler, RN, Hemophilia Treatment Center, Children's Hospital of Philadelphia, 34th Street and Civic Center Blvd., 4th Floor Wood Building, Philadelphia, PA 19104, Dawn vonMayrhauser, MSW, LCSW, Social Work, University of Connecticut Health Center, 363 Farmington Ave., Farmington, CT, and Berry Mary Jane, MSW, Health Sciences Center, Medical Center Drive, West Virgrina Medical Center, RM 4809 Health Sciences North, Morgantown, VA 26505.

Introduction: Women with bleeding disorders often experience multiple medical complications before diagnosis of their condition, and their menorrhagia can adversely affect their quality of life. To decrease morbidity and improve quality of life, MCHB funded comprehensive care hemophilia centers have outreached to women with bleeding disorders to provide them with multidisciplinary services, including medical education and treatment, and psychosocial support. Method: The Region I and III hemophilia treatment networks collaborated to develop and implement a 2 day pilot program for women with bleeding disorders. The program offered educational and networking components. To evaluate the effectiveness of the program, participants completed demographic surveys, quality of life surveys, pre and post knowledge tests , and program assessments. Results: 24 out of 25 participants completed the surveys. Median age was 42.5 (range 21-72). The majority (19) had a family history of a bleeding disorder. 65 % indicated bleeding had a moderate to extreme impact on their life. Pre- and post-tests analysis revealed participants significantly increased their knowledge of resources for information and support (21% vs 80%) and benefits of treatment from a specialized hematologic team (42% vs 83%) Conclusion: Although most of the women had received medical care, many had suffered bleeding complications without referral to specialized care for diagnosis and treatment. . This program was successful in expanding participants’ knowledge of medical treatments, available educational resources, and providing an opportunity to network with other women with bleeding disorders. This model could be utilized for outreach efforts in other regions.

Learning Objectives:

  1. Discuss two medical related issues faced by women with bleeding disorder
  2. Identify two quality of life isues faced by women with bleeding disorders.
  3. Identify two benefits of regional educational programs for women with bleeding disorders

Keywords: Health Education Strategies, Women's Quality Care

Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: none
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

The 129th Annual Meeting of APHA