Our work over the years has consistently taught us one lesson in particular: Family members are critically important in the process of caring for patients with serious illnesses.
—David H. Gustafson, PhD
Our work on an Internet-based intervention for lung cancer confirmed what many other studies have shown about technologic interventions for health-care consumers—that such interventions can improve quality of life for caregivers and patients.1 We expected this result in part because of the clinician report in CHESS for lung cancer. This report sends alerts to a patient’s clinical team whenever a patient’s symptoms exceed a preset threshold.
In fact, our early finding about the value of the clinician report led us to conduct a separate randomized trial of a system with the clinician report vs a system without it, and this study confirmed the value of the report.2 We believe the power of the clinician report comes from bringing patients and clinicians together, giving them more direct and frequent communication when they need it than they otherwise have, and enabling clinicians to respond to symptoms more effectively.
We did not expect the survival effect we found in the trial of CHESS for lung cancer. This was just one study of a few hundred patients—the finding needs to be confirmed. Although we conducted exploratory analyses of CHESS use that are reported in the paper, we also need to learn more about who benefits most from such systems as CHESS. We know that not all families benefit equally, but we don’t know which families benefit or under what conditions they benefit.
The Importance of Family
We have been developing and testing CHESS programs for cancer and other illnesses and chronic conditions for more than 20 years, yielding extensive evidence not just about the effect of such interventions on patient and caregiver quality of life, but also some evidence that the interventions can reduce costs.3 Our work over the years has consistently taught us one lesson in particular: Family members are critically important in the process of caring for patients with serious illnesses. I learned this myself, as patient rather than researcher, in an experience I described elsewhere,4 and the lung cancer study brought this lesson home to us again.
With hospital discharge taking place earlier in the course of patient treatment and hospital readmissions becoming a widely recognized problem, family members matter even more. Their impact on a patient’s outcome can be immense and positive if they get the support and information they need, and that support and information are more readily available through a system like CHESS than any other ways I know of.
The Challenge of Dissemination
Even though we know that CHESS systems can help patients and their caregivers, we don’t know how to get such systems into wide use. In addition to tests of efficacy, we need studies to learn how best to implement such systems and sustain their use in the real world. We simply don’t know yet how to encourage clinicians and patients to use the system.
One obstacle to the widespread dissemination of CHESS specifically is that the programs have been built to answer research questions, not to be widely used as products. In developing CHESS for research tests, we’ve taken shortcuts that would not hold up in a large-scale implementation of the system. For example, staff members at our research center act as moderators of discussion groups in CHESS systems; we haven’t created tools that enable users to do this themselves.
Making the changes to CHESS that would transform it into an efficient, reliable system for widespread use would require both initial and ongoing investments. If an organization has the interest in and resources for doing this, we would make CHESS available and cooperate to make broad dissemination a reality. ■
Dr. Gustafson is Emeritus Research Professor and Founder of the Center for Health Enhancement Systems Research and Analysis, University of Wisconsin-Madison.
Disclosure: Dr. Gustafson has no potential conflicts of interest to disclose.
1. Free C, Phillips G, Galli L, et al: The effectiveness of mobile-health technology-based health behavior change or disease management interventions for health care consumers: A systematic review. PLoS Med 10(1):e1001362, 2013.
2. Chih MY, Dubenske LL, Cleary J, et al: Communicating advanced cancer patients’ symptoms via the Internet: A pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood. Palliat Med. September 17, 2012 (early release online).
3. Gustafson DH, Hawkins RP, Boberg EW, et al: The use and impact of a computer-based support system for people living with AIDS and HIV infection. Proc Annu Symp Comput Appl Med Care, pp 604-608, 1994.
4. Gustafson DH: A systems engineer meets the system. JAMA 309:247-248, 2013.
The results of a study reported by David H. Gustafson, PhD, Research Professor at the University of Wisconsin-Madison, and colleagues in Cancer suggest that informal caregiver (eg, family member) use of a specifically designed online system to support palliative care reduces symptom distress in...