Using the Internet to Collaborate with Consumers in Redefining a Psychosocial Agenda for Families with Hereditary Breast Cancer

Abstract

Women at increased risk of Hereditary Breast and Ovarian Cancers (HBOC) and their families face dilemmas about testing, risk management and family dissemination of results on their own. They face problems regarding the accuracy of the information they have received, difficulties accessing new information and specialized services, and resistance and misinformation from inadequately informed health care professionals in the community. Thus, they are forced to develop their own informal means of individual and communal coping and to identify and access appropriate formal services without guidance. The FORCE website (www.facingourrisk.org) serves important functions in the sharing of information, provision of support and active problem-solving, and in normalizing and validating the women's response to their predicament. This project is intended to yield the basis for clinically useful tools to reach out to these women and better address their unmet needs. It will identify the specific tasks with which they need assistance and the forms that competent coping takes. Results will give impetus to new clinical, public policy, and research agendas for women and their families living with inherited risk of cancer. To date, we have combined quantitative and qualitative analyses to identify and examine one of the most frequently discussed topics on the message boards; decision-making regarding the use of hormone replacement therapy (HRT) following prophylactic oophorectomy (PO). Findings demonstrate that women struggle to make difficult health and quality of life decisions under conditions of medical uncertainty. Controlled studies examining the impact of HRT on breast cancer risk in BRCA+ women following PO are warranted.

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Document Details

Document Type
Technical Report
Publication Date
Jun 01, 2005
Accession Number
ADA446294

Entities

People

  • James C. Coyne
  • Pamela J. Shapiro

Organizations

  • University of Pennsylvania

Tags

DTIC Thesaurus Topics

  • Breast Cancer
  • Cancer
  • Communities
  • Consumers
  • Department Of Defense
  • Drug Therapy
  • Families (Human)
  • Genetic Testing
  • Health Care
  • Health Services
  • Internet
  • Neoplasms
  • Ovarian Cancer
  • Public Policy
  • Quality Of Life
  • Risk Management
  • Social Psychology

Fields of Study

  • Medicine

Readers

  • Systems Analysis and Design
  • Women's Health and Cancer Risk Research: African American Women and Pregnancy Outcomes.