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Key Findings

Our results indicate that CHESS improved social support, information competence, participation in health care, and quality of life in this group of patients. After two months of implementation, there was either a significant main effect or interaction with an indicator of medical underservice for information needs and competence, and all three measures of health care participation. The benefits of CHESS were stronger in the short run.

Usage Patterns: Caucasian women and women of color used CHESS equally frequently (5.9 and 6.2 times per week respectively). Discussion group accounted for 68% of Caucasian women's use, and 38% for women of color. Use of CHESS information services was equal for the groups, although women of color used the self-tracking and decision services considerably more than Caucasian women (over four hours during the study vs. just under one hour).

Information Competence: After two months of implementation, the CHESS group scored significantly higher (4.8 points) than controls on competence dealing with information.

Dealing with the Health Care System: After two months, the CHESS group scored significantly higher (6.4 points) than the control group on level of comfort with their participation in the health care system, and significantly higher (5.7 points) than controls on confidence in their doctors.

Social Support: After five months' implementation, the CHESS group scored significantly higher (4.9 points) than controls on social support.

Benefits to the Medically Underserved: There were several interactions of indicators of medical underservice with the CHESS intervention: greater benefits among women of color, the uninsured, and those with less education. Low education and lack of health insurance were equally as or more germane than race in identifying women who benefited most.

Overview

The objective of this research project was (1) to understand the effect of CHESS on the quality of life of women with breast cancer, and (2) to begin to understand how and for what kind of people CHESS has that effect. More specifically, the study proposed that CHESS would affect breast cancer patients' perceptions of six outcomes: 1) social support, 2) unmet need for information, 3) competence dealing with that information, 4) participation in health care, 5) confidence in doctors, and 6) psychosocial quality of life. It was also proposed that the effects of CHESS would be greater for the medically underserved, primarily indexed by race.

The Need

The physical effects of breast cancer and its treatment can significantly compromise quality of life. Among African-American women, the disease's impact is even more serious, with higher rates of mortality related to breast cancer. An intervention to improve information-seeking skills, social support, and patient participation in health care might improve psychosocial aspects of quality of life for breast cancer patients. Previous CHESS research with HIV-infected patients found they used CHESS extensively, and access to CHESS reduced mood distress, and improved cognitive functioning, social support and active involvement in life. Also, underserved minority HIV patients used CHESS overall as much as middle-class Caucasians, but participated less in discussions, while making heavier use of information and decision services.

Details

The randomized, controlled trial was conducted between 1995 and 1998, with 246 newly diagnosed breast cancer patients under age 60. Subjects were recruited from five sites: two teaching hospitals (Madison, WI and Chicago, IL); two nonteaching hospitals (Chicago, IL) and a cancer resource center (Indianapolis, IN). The latter three sites treated many underserved patients. Participants randomly assigned to the experimental group received the CHESS Breast Cancer module for a six-month period; CHESS staff delivered and installed a computer, gave brief training and a user's manual. Control group participants received a copy of Dr. Susan Love's Breast Book.

Principal Investigators:
David Gustafson Sr., Ph.D

Publications

  • Journal of general internal medicine.
    Effect Of Computer Support On Younger Women With Breast Cancer

    Gustafson DH, Hawkins R, Pingree S, McTavish F, Arora NK, Mendenhall J, Cella DF, Serlin RC, Apantaku FM, Stewart J, Salner A