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Key Findings

Physician Recruitment: 94% of all surgeons (48/51) who cared for Medicare eligible women with breast cancer in the region agreed to refer those participants to CHESS. There were no obvious differences between surgeons who agreed to participate and those who did not.

Patient Referral: 90% of all patients were referred to us (45/51) by their surgeons; the rest came from self referral as a result of local publicity about the study. We estimate that surgeons referred to us 65% of all patients who were eligible.

Patient Acceptance: 75% of the patients referred to us (38/51) ended up having CHESS placed in their homes. Two factors may distinguish CHESS acceptors from CHESS rejectors: women who lived alone accepted CHESS 91% of the time, while women who lived with someone else accepted it 60% of the time; and acceptors were most likely to have some computer experience (36% vs. 16% for those who declined) although the vast majority of women who accepted CHESS had no computer experience.

Patterns of Use: The extent to which Medicare-eligible women with breast cancer used CHESS compares favorably with studies of younger women with breast cancer. The Medicare women used Discussion groups less (but still more than any other service) and the Decision, Action Plan and Stress Management programs more than younger women. The most common reason for using CHESS services (other than Discussion Group) was to obtain technical information. Discussion Group was used to obtain social support. Neither age, computer experience, nor number of co-morbidities affected the amount of CHESS use.

Impact on Quality of Life: We measured changes in 48 quality of life questions. High users of CHESS (the top 65% of users) were ten times more likely than low users to improve on quality of life. Because there was no control group, we can't be sure whether the high users would have improved more than low users even without CHESS, however, we were unable to identify other factors that may account for improvement in quality of life. Furthermore, when compared to CHESS studies that involved control groups, the results of this study were similar on 28 questions, better on 9 of them, and worse on 11. The implication is that CHESS seems to be having a positive impact on quality of life in older women with breast cancer.

Decision-Making: Patients who chose lumpectomy over mastectomy seemed to have different system of values. Risk of recurrence was less important to them and physical concerns such as arm mobility seemed more important. We found few differences between patients who choose and reject tamoxifen. The number of patients (6) who made a chemotherapy decision were few, preventing any conclusions about the values driving them. However, those who made the chemotherapy decision felt CHESS services were either quite or very helpful. Several patients said they wished that CHESS were available much sooner. The implication is that CHESS can help us understand the issues driving women's breast cancer decisions, and while CHESS is having a positive effect on quality of life (and possibly on chemotherapy decision making), we need to get CHESS to patients sooner if we want it to have maximal effect on their surgical decision making.

Overview

This project tested the feasibility of recruiting Medicare-eligible breast cancer patients (and their doctors) in a five-county area of Wisconsin to accept and use CHESS, and demonstrated the feasibility of conducting a full-scale evaluation of CHESS impact with this population. No previous evaluations of CHESS addressed its effects in a Medicare-eligible population, nor did they address the extent and means by which CHESS can reach and influence a full population of patients (as opposed to a group of patients who volunteer to participate in a study).

Details

This project allowed us to examine the practicalities of a region-wide dissemination of CHESS, including what happens when we target a complete geographic region containing a wide variety of health care providers ranging from large integrated delivery systems to solo practitioners in small rural areas. We learned how to penetrate various segments of the delivery system and how effectively such strategies worked. The five-county area included in this study covers urban, suburban and rural areas, a range of socioeconomic status, and a mixture of health-care organizational structures. The project had two goals:

  1. Examine CHESS acceptance and use in a population of female Medicare beneficiaries with breast cancer, in particular:
    1. Examine CHESS acceptance and use in a population of female Medicare beneficiaries with breast cancer, in particular:
      • Maximize the extent to which physicians and surgeons encouraged these patients to use CHESS;
      • Maximize the extent to which Medicare-eligible women with cancer accept and use CHESS; and,
      • Understand factors that distinguish women who accept and use CHESS from those who don't.
    2. Collect preliminary evidence of whether CHESS has had an impact on quality of life and treatment decisions in preparation for a full-scale evaluation of CHESS effects.

Funding Period:
October 1995
Principal Investigators:
David Gustafson Sr., Ph.D