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OBJECTIVE: Assess impact of a computer-based patient support system on quality of life in younger women with breast cancer, with particular emphasis on assisting the underserved.
DESIGN: Randomized controlled trial conducted between 1995 and 1998.
SETTING: Five sites: two teaching hospitals (Madison, Wis, and Chicago, Ill), two nonteaching hospitals (Chicago), and a cancer resource center (Indianapolis, Ill). The latter three sites treat many underserved patients.
PARTICIPANTS: Newly diagnosed breast cancer patients (N = 246) under age 60.
INTERVENTIONS: Experimental group received Comprehensive Health Enhancement Support System (CHESS), a home-based computer system providing information, decision-making, and emotional support.
MEASUREMENTS AND MAIN RESULTS: Pretest and two post-test surveys (at two- and five-month follow-up) measured aspects of participation in care, social/information support, and quality of life. At two-month follow-up, the CHESS group was significantly more competent at seeking information, more comfortable participating in care, and had greater confidence in doctor(s). At five-month follow-up, the CHESS group had significantly better social support and also greater information competence. In addition, experimental assignment interacted with several indicators of medical underservice (race, education, and lack of insurance), such that CHESS benefits were greater for the disadvantaged than the advantaged group.
CONCLUSIONS: Computer-based patient support systems such as CHESS may benefit patients by providing information and social support, and increasing their participation in health care. These benefits may be largest for currently underserved populations.
Breast cancer, the most common cancer among women, accounts for 29% of all new cancer diagnoses in the United States, and is the leading cause of cancer death among women between 20 and 59 years old. The physical effects of breast cancer and its treatment (depression, fatigue, hair loss, weight gain, and changes in physical appearance) can have a devastating impact on quality of life,1–4 affecting women's self image and ability to carry out roles within and outside the home. Ability to deal with complex information, obtain social support, and participate (as desired) in one's care become crucial in minimizing that devastation.5,6
The impact of breast cancer is even more serious among African-American women, whose breast cancer-related mortality rates are higher than for Caucasians.1,7 Moreover, medical underservice (often associated with minority status and with less health insurance, income and formal education) leads to fewer opportunities to participate in care or obtain needed information and social support.8–10
An intervention that improved information seeking skills, social support, and patient participation in health care might improve psychosocial aspects of quality of life.11–13 Computer-based systems provide a venue for such an intervention, because multiple services (e.g., rapid access to information, support groups, and decision support systems) can be integrated to support each other. Furthermore, in-home systems are available to patients when and where needed. Because the medically underserved often lack other resources, such services should have greater impact for them than for traditionally better-served groups.
This paper reports on a randomized controlled evaluation of one such system, Comprehensive Health Enhancement Support System (CHESS), developed at the University of Wisconsin-Madison. In a previous randomized trial, HIV-infected patients used CHESS extensively, and access to CHESS reduced mood distress and improved cognitive functioning, social support, and active involvement in life.14 Unpublished anecdotal comments by clinicians suggested that CHESS users also participated more effectively in their care. Qualitative analyses found that those who improved most had done so by using the CHESS information and decision components in thoughtful and connected ways for moderate amounts of time, rather than by spending large amounts of time in discussions with other patients.15 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.16,17 Although CHESS effects did not show significant interactions with race for HIV patients, these two findings suggest that such interactions might occur.
Pilot tests of CHESS with breast cancer patients indicated widespread acceptance and use of CHESS, including by low-income African-American women.18,19 Thus, we 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 doctor(s), and 6) psychosocial quality of life.
Effects of CHESS would be greater for the medically underserved, primarily indexed by race.
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Based on needs assessment studies,13 CHESS was designed to help breast cancer patients and their families deal with information, be more active and confident participants in their health care, increase social support, and better maintain their socio-emotional quality of life against the impact of a breast cancer diagnosis and its treatment. And because minority women may have limited access to health care information and other resources, benefits for them are potentially even greater.
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. No significant main effects were found among four quality of life measures, but there was a consistent pattern among the interactions matching significant ones found elsewhere. CHESS' mixture of disease information, self-monitoring and decision tools, along with shared experiences and support from other patients, may help patients tolerate treatment better, have more positive feelings about treatment, and therefore may improve outcomes as well.
The benefits of CHESS were stronger in the short run. Five months after implementation, benefits of CHESS were considerably less consistent. There were still significant increases in information competence and social support measures, but no difference for health care participation (possibly because there is less contact with the health system at this time) or quality of life. Thus, the benefits of a consumer support tool like CHESS may dissipate over time. However, inspection of group means in Tables 2 and 3 suggests instead that control subjects eventually improved on their own between two and five months, as time since diagnosis and treatment passed, while the CHESS group changed little beyond their two-month scores. Given the strains on breast cancer patients around the times of diagnosis and treatment (corresponding to the first post-test), CHESS appeared to help patients when they most need it.
There were several interactions of indicators of medical underservice with the CHESS intervention: greater benefits for women of color, the uninsured, and those with less education. Note that race was not always the best locator of these interactions; low education and lack of health insurance were equally or more germane in identifying women who benefited most. Because the underserved have fewer resources, any incremental resource may have the potential to make a bigger difference for them.
Although we predicted such interactions, what is always at issue is whether the disadvantaged will have the ability and motivation to take advantage of that potential.17 Because CHESS (and other consumer health support services) relies heavily on written information, literacy and ease of reading are potential barriers for the underserved. In addition, the disadvantaged may be less experienced and comfortable with computers. Our results encourage optimism that computer technologies can assist the disadvantaged, because motivation provided by a life-threatening disease may overcome barriers to use. Disadvantaged women gain relatively more benefit because alternative resources are equally available to advantaged women in both experimental and control groups. Moreover, minority women made less use of the Discussion Group, but more use of self-monitoring, planning and decision services, which we argued earlier may be more beneficial.
The clinical or personal importance of the changes reported here is a more complex issue, because no clear benchmarks exist for the information or health care participation variables. For the quality of life variables, however, two studies have demonstrated that 7.1–10.7 unit (translating to the 0–100 scale used here) changes in the functional well-being scale were associated with meaningful improvements in hemoglobin for patients treated for a variety of cancers.36,37 None of the main effects for this measure or the other quality of life measures developed in the same way by the same researchers26–29 were significant. If the same standard were applied to the information and health care participation measures for which significant main effects were observed, one could say that those main effects ranged in size from one-half to the lower bound of the clinically important range. More importantly, although the estimates are less reliable for the smaller sample size, the size of effects for the medically underserved (women of color, lower education, no private insurance) are consistently in or larger than this range, including two effects on functional well-being and one other measure of quality of life. Thus, it would appear that the effects observed here for the medically underserved probably are personally and clinically, as well as statistically, significant.
Our results are probably generalizable to the U.S. population of younger women with breast cancer, although there are some remaining limitations. The ethnic diversity of the patients in the study (74% Caucasian, 22.4% African American, and 3.6% other minorities) is similar to that of the U.S. (72.2% Caucasian, 12.5% African American, and 15.3% other minorities).38 The study sites included both public and private hospitals, some of which were teaching hospitals. Patients came from urban, small-city, and rural areas and included all socioeconomic strata, although all were from the Midwest. We did not include older women with breast cancer in this study. However, a recent CHESS evaluation in Medicare women found similar levels of acceptance and use.39 In addition, patients treated in small, rural general surgeries were excluded, because including many clinics with few patients each would have been prohibitively expensive. Nonetheless, reactions to CHESS by patients at small clinics could conceivably be different from those at the specialized clinics studied here.
Our decision to compare CHESS to a control condition employing Dr. Susan Love's Breast Book creates a potential limitation to generalizability. Although we did this so that control-group patients from five different clinics would have access to a comparable base of information, this could produce a conservative bias in experimental group comparisons. If so, actual implementations of CHESS might produce slightly larger effects than those seen here. Conversely, one could argue that some benefits (particularly social and information support) could result simply from being loaned a computer, rather than the particular content it contained. We are skeptical of that explanation, given the heavy use of CHESS, but a current study is comparing CHESS to mere Internet access.
A final limitation is that the study reports aggregate effects for a support system, having many components designed to work together. While this approach was deliberate, and derived from the variation of patient needs,18,20 we cannot say whether specific portions of CHESS were responsible for these effects. Assigning each of a dozen or so CHESS components to different groups could address this. However, we feel this would be a disservice to the patients involved by depriving each of the majority of services, and the ability to integrate material from different services. However, given interactions with indicators of medical underservice, lower use of Discussion Group by women of color, and the match this presents with prior work on HIV-CHESS,15 one might wonder whether CHESS could function effectively without the Discussion Groups (which accounted for 55% of all use). The ongoing study mentioned above includes a reduced-CHESS condition without the Discussion Group and Ask an Expert components.
Future research should compare CHESS against alternative support services of comparable or less cost. Many professional programs (such as group psychotherapy for women with breast cancer) exist for people with life threatening illnesses. How would they compare to CHESS and how would a combination of CHESS and such programs affect women with breast cancer?
Although this study was conducted while CHESS was a stand-alone program, it has now migrated to the Internet, potentially changing its accessibility and cost. More people are now gaining access and using the unregulated and possibly overwhelming world-wide web.40 In fact, nearly 75% of all breast cancer patients now offered CHESS already have Internet access. However, although this research suggests that the underserved may benefit most, they currently are least likely to have such access.41,42
Costs of a wide scale dissemination of any interactive health communication (IHC) system depend on the implementation strategy employed. One could provide the system in the same way as most web sites: offering it to anyone with Internet access. Alternatively patients could be actively recruited to and supported in their use of the IHC.
In that case, costs would be divided into those associated with “marketing” the IHC to patients and costs of operating the IHC once patients accept it. Assuming three-month access, we estimate that a system like CHESS might be delivered for approximately $150 per patient, including purchasing computers to loan. Delivery would be cheaper for patients who have Internet access, but relying on this strategy would exacerbate digital divide problems. An aggressive recruiting effort would increase costs. However, given the benefits observed here, and their concentration among those most in need of help, we believe an aggressive strategy is justified.