University of Wisconsin, Madison
- Project 1
Controlled trial will examine whether breast cancer patient outcomes change as different types of conceptually distinct CHESS services (information, social support, and skills training) are systematically added to a patient's treatment resources
- Project 2
Fully-crossed design to test the efficacy of CHESS and a human Cancer Mentor against a control condition in which patients are given only access to the Internet (rapidly becoming a de facto standard information care situation)
- Project 3
Evaluates whether CHESS improves palliative care and the impact of sharing patient information with clinicians
The goal of the University of Wisconsin (UW) Center of Excellence in Cancer Communication is to advance interactive cancer communication systems (ICCSs) to improve the quality of life of patients and families facing cancer across the disease spectrum – with special emphasis on underserved populations. CHESS (Comprehensive Health Enhancement Support Systems), developed at UW is an ICCS that pioneered the use of interactive computer technology for cancer patients. In the five years of this proposal investigators will:
- Extend the reach of interactive health communication systems to include new skills in managing distress, relating as couples, help for caregivers and patients facing the end of life and bereavement, and sophisticated tailoring of systems to individual needs
- Understand the mechanisms of effect of a successful interactive cancer communication system
- Measure the cost and outcomes of integrating interactive computer technology with NCI Cancer Information Service (CIS) telephone information service, creating a cancer mentor
- Learn the impact on patient and caregiver quality of life when clinicians are informed electronically about patient's health status and patient and caregiver levels of distress
- Determine how partner/caregivers are affected by interactive cancer communication systems
- Develop cost-effective ICCS for the underserved
- Build an inter-disciplinary structure that supports creative discourse, understanding, and modeling of pioneering cancer communication technologies
Cancer produces profound social, interpersonal, psychological and communication challenges. The severity, sudden onset, and complexity of these challenges tax traditional health systems. The newly diagnosed cancer patient needs clear and timely information, help in making decisions, emotional support, and effective coping skills. Modem communication technologies have the potential to provide interventions that target three distinct goals – the provision of information, social support, or new/improved skills. Unfortunately, there is virtually no research establishing the relative worth of these goals, how well the different types of interventions accomplish their goals, and how the interventions work overall and for specific patient types. CHESS is an innovative technology that provides information, social support, and skills training. Previous randomized trials of CHESS found improved patient welfare including quality of life (QOL), participation in decisions and health services use. But, as with other communication technologies, little is known about which strategies produce those benefits. Do patients do better with a broad array of expensive services, or will they benefit result from fewer, less costly services? Answers will reveal factors that make communication technologies effective and how to enhance them. This controlled trial will examine whether breast cancer patient outcomes change as different types of conceptually distinct CHESS services (information, social support, and skills training) are systematically added to a patient's treatment resources. Process analyses will identify specific CHESS effects responsible for global outcomes such as improved QOL. CHESS is an ideal platform for investigating which communication treatments are effective given substantial evidence that something in CHESS is effective – we just do not know what it is, or how it works. Newly-diagnosed breast cancer patients (N = 360) will be randomly assigned to four intervention groups:
- CHESS providing information, social support and skills training (full CHESS)
- CHESS social support and information
- CHESS information only
- a control group receiving usual care+interact access.
Subjects will be tracked for 56 weeks to assess health, adjustment, and relational outcomes. This research will help reveal the types of treatments that are most helpful to cancer patients and how those treatments work.
CHESS is an interactive health communication system that has successfully improved quality of life, information skills, and health care utilization for cancer patients. Further advancing interactive health communication systems will require integrating them with human-based systems that already do or potentially could serve patients as well. This project will investigate the benefits of continuing access to a human Cancer Mentor who keeps track of the patient and calls her regularly to offer help, thus potentially providing patients with considerable tailoring and guidance. Those benefits should be even more effective in the company of an Interactive Cancer Communication System like CHESS, because the mentor will know what CHESS will know about the patient as well. Conversely, the Cancer Mentor's knowledge of CHESS and her recommendations for how to use it should lead patients to use it more effectively. Investigators will therefore employ a fully-crossed design to test the efficacy of CHESS and a human Cancer Mentor against a control condition in which patients are given only access to the Internet (rapidly becoming a de facto standard information care situation). Additionally, investigators will test the benefits of combining the two against those of either alone. With a sample of 360 breast cancer patients from three hospitals randomized to the four arms, researchers will measure the effect of these conditions on the primary outcomes of five aspects of patient quality of life, and cost of providing the interventions. Secondary analyses will examine mediating processes such as satisfaction with the medical system, health self-efficacy (including information competence), knowledge of their own condition, sense of an expert watching over them (and trust in those experts), and information overload.
Coping with advanced cancer is facilitated by exchanges between patients, caregivers, and clinicians. Clinicians need information about the patient's status to intervene appropriately. Patients and partners need information and support from clinicians. Clinicians need to facilitate end of life communication with and between patients and families. But clinicians are being forced to reduce visit time and many patients and partners avoid bothering the doctor. Hence, methods are needed to improve these communications. The proposed research evaluates whether ICCSs improve palliative care and the impact of sharing patient information with clinicians. The ICCS is CHESS, a non-commercial home-based system created University of Wisconsin scientists. Previous research shows CHESS to be widely accepted and used, and to improve quality of life and health services use. Built on a model of coping self-efficacy, CHESS monitors user health status, guides users to information and support, assists in health decisions and teaches coping skills. An enhanced system [CHESS + Clinician Report (CR)] will communicate patient and partner information to the palliative care team when the team wants it, prior to a scheduled clinic visit and when a symptom exceeds a threshold. Lung cancer patients and partners (25% minority) from Detroit, Madison, and Boston (n=380) will be randomly assigned to: 1) a control group of patients receiving Usual Care (and Intemet access), 2) CHESS and 3) CHESS with a Clinician Report (CHESS+CR). Partners will be followed until 13 months after the patient dies. Hypotheses: compared to a Usual Care control, CHESS will improve patient quality of life, symptom distress, partner negative affect, and bereavement. CHESS+CR will have more impact and decrease emergency health services use. Minority and female partners will benefit most. Process analyses will examine how these effects are mediated by symptom management, calls from clinicians, partner caregiving burden, coping self-efficacy, information competence, needs met at clinical visits, and how they are moderated by amount of CHESS use.