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CHESS: Health Information and Decision Support for Patients and Families

When conditions like Alzheimer's disease are diagnosed, patients and families desperately need help. At this emotional and confusing time, individuals and families may not know what to ask, may not understand what healthcare providers say, and may make uninformed, but sometimes irreversible, decisions. Family caregivers of people with Alzheimer's disease and other forms of dementia and many other health problems need credible, timely, one-stop information about options and resources available for making and implementing longterm-care decisions within their communities. Lack of knowledge about what to ask and where to go for resources and information often stymies families and keeps them from moving ahead in a search for long-term-care resources and services. Older adults and family members want access to reliable information and intermediaries to use as sounding boards for decisions they are considering (Gustafson and Gustafson, 1996). The lack of an integrated long-term-care services delivery system means that families often go to professionals for advice but only receive a small piece of the picture. What is more, the pressures on providers to reduce costs of care mean that time to help patients and families cope with these crises is very limited. New ways are needed to help patients and families cope, make decisions, and obtain the support they need. There is growing evidence that computers can help fill this void. In fact, a growing body of evidence suggests that older people will use (Ogozalek, 1991; Gustafson and Gustafson, 1996) and benefit from (Brennan, Moore, and Smyth, 1995) computer support, if impediments such as small icon and font size are removed, if training is self-paced and includes ways to ask questions (Zandri and Charness, 1989), if the interface is easy to use, and if new features are added at a slow rate (Czaja et al., 1990) . Our work in this area has concentrated on building CHESS, the Comprehensive Health Enhancement Support System. Using a personal computer placed at home, users can obtain brief answers to many standard health questions, as well as detailed articles and descriptions of services they may need. They can also anonymously ask questions of experts and communicate with and read personal stories about people with similar problems. CHESS computerized systems help users monitor their health status, make important health decisions, and plan how to implement those decisions. Extensive research has been done on effects of CHESS. Results show that CHESS was accepted and extensively used (Gustafson et al., 1993; Boberg, Gustafson, and Hawkins, 1995), even by underserved minority patients with low levels of education (McTavish et al., 1994; Pingree et al., 1996). A recent study funded by the Health Care Financing Administration found that women with breast cancer between the ages of 65 and 85 accepted and used CHESS as readily as younger women (Gustafson and Gustafson, 1996). Two randomized clinical trials of CHESS (with AIDS and breast cancer patients) found significant increases in quality of life. The AIDS study also found that CHESS significantly reduced both probability of hospital admission and length of stay compared to the control group (Gustafson et al., 1993). Reasons for CHESS success include the following: ease of use; understandability (content presented at an eighth-grade reading level); anonymity for the user; high-quality content developed to respond to a prioritized set of needs and reviewed by experts; access to small, carefully facilitated discussion groups; and personal responses from experts to user's e-mail questions. In 1996 (with support from the Alzheimer's Association), we developed a prototype CHESS module for family caregivers of patients with Alzheimer's disease. During August of 1996, with the help of the Madison, Wisconsin, chapter of the Alzheimer's Association, CHESS was tested by eighteen families having a family member with recently diagnosed Alzheimer's disease. …