A Closer Look
Using e-Health Tools to Improve Quality of Life for Cancer Patients
This is the fourth article in a series of stories related to cancer communications. Look for the symbol on the left in an upcoming issue for the next article in the series.
A cancer diagnosis can quickly rob individuals of normalcy. The news often also leaves people confused about how and where to get the information and support they need. To address these difficult issues, researchers at the University of Wisconsin-Madison have developed electronic communications tools to help provide this information and improve the quality of life of patients with cancer and others suffering from serious illnesses.
CHESS started out as a DOS-based system run from a local computer, and now it's on smartphones.
—Dr. David Gustafson
The work has been under way for more than 3 decades at the university’s Center for Health Systems Research and Analysis (CHSRA), an NCI Center of Excellence in Cancer Communication Research (CECCR). The CHRSA’s flagship communications program, called the Comprehensive Health Enhancement Support System (CHESS), has grown in parallel with the rise of the Internet and online advancements.
“CHESS started out as a DOS-based system run from a local computer, and now it’s on smartphones,” said Dr. David Gustafson, principal investigator of the CHSRA. “The Internet has influenced CHESS in an enormous number of ways. Things like online discussion groups were not nearly as effective before the Internet, and they are now the heart of key parts of CHESS.”
Fundamentally, CHESS is a type of consumer health informatics system designed to provide patients with expert information, decision aids, and emotional support. In its current form, it contains information services, such as a library of cancer articles and a resource directory; communications services, such as moderated discussion groups and the ability to speak with online experts; and decision services, which help patients weigh treatment options against their personal values. Recent upgrades have added a clinician report feature, which updates doctors on the health status information a patient enters into CHESS.
Randomized trials and population-based studies have shown that CHESS can improve quality of life in diverse groups of participants, such as women with breast cancer (including those in underserved populations and the elderly), people with HIV, and people battling substance abuse. CHESS has also been shown to improve the doctor–patient relationship. The system’s efficacy has been widely accepted, to the point where CHESS is being used as a control arm for trials of new communications interventions.
One advantage CHESS has over the Internet is that it’s a self-contained system, Dr. Gustafson explained. “When patients go onto the Internet, they get so much conflicting information,” he said. “In one trial, we even found that anxiety increased for some patients who were given access to the Internet.” In that study, women in the group using CHESS improved their quality of life, social support, and health information competence, whereas these measures did not improve in women who had Internet access alone.
Testing CHESS in the Real World
So far, the studies of CHESS have been performed under idealized conditions, where researchers often provided participants with computers and detailed coaching on how to use the system. But such a resource-intensive strategy would be difficult to implement in a normal clinical setting. To test whether CHESS remains effective in the real world, Dr. Timothy Baker, professor of medicine at the University of Wisconsin-Madison, is currently leading a randomized trial of CHESS in collaboration with Kaiser Permanente Northwest in Oregon and Washington.
“We’re trying to understand what proportion of women will use CHESS if a health care system offers it as part of their usual care, given the normal constraints and barriers that the women will face,” explained Dr. Baker.
The researchers are in the process of recruiting 600 women newly diagnosed with breast cancer into the study. Participants will be randomly assigned either to CHESS or to a control group that will have access to several electronic health resources in use at Kaiser Permanente. So far, about 35 percent of the women approached have agreed to participate in the study.
The women have access to CHESS or the control resources for a year after enrollment and will complete follow-up questionnaires at points up to 8 months afterward. The researchers plan to measure changes in quality of life using the Health Utilities Index, a tool used to classify health status. They will also look at the impact on the care process, such as whether women who receive CHESS call their health care providers less or more than women in the control group and whether patients and doctors rate their encounters more favorably if the patients received CHESS.
“We’re measuring a lot of real world outcomes, such as health care utilization, that are of great relevance to health care systems,” said Dr. Baker. Having such information, he continued, will allow hospital administrators and physicians “to make informed decisions about whether to offer more intensive e-health resources as part of standard care.”
Mobile Access, Mobile CHESS
Access to the Internet is increasingly mobile, as smartphones and other wireless communications devices grow in popularity and availability. Dr. Deborah Mayer, associate professor in the School of Nursing at the University of North Carolina, is interested in bringing CHESS to these on-the-go platforms to help colon cancer survivors increase their physical activity after treatment and improve their quality of life.
“There are a lot of mobile health applications out there, but our mobile CHESS (Survivorship CHESS) system is really tailored to the colon cancer survivor,” explained Dr. Mayer. “It presents information about issues that might be unique to them, like if they had chemotherapy and have peripheral neuropathy in their feet. Or, if they’re still having problems with their bowels, it talks about how someone in that situation might be able to successfully increase their physical activity,” she continued. The system also features colon cancer survivors telling their stories about how they managed their transition when treatment ended and how they became more physically active.
Dr. Mayer and her colleagues are recruiting 294 patients who have completed treatment for colon cancer into the trial at three different sites (the University of Wisconsin-Madison, the University of North Carolina at Chapel Hill, and the University of Texas M. D. Anderson Cancer Center). The researchers will randomly assign participants to either CHESS or no intervention for 6 months, and the patients will be followed for an additional 3 months to track whether their physical activity levels continue to change after the intervention.
The Survivorship CHESS system includes interactive feedback, such as a tool that allows participants to set and track their exercise goals week by week. Survivorship CHESS also features a buddy system that lets participants chat with other survivors in the study, and information about colon cancer survivorship that would be of interest to participants, including interactive evidence-based recommendations on cancer surveillance. “We’re integrating the survivorship care plan into this system,” said Dr. Mayer. “If this really works for patients, we could negotiate and make it usable on a BlackBerry or an iPhone or any number of mobile application platforms—it could really be scalable for access to other survivors.”