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Key Findings

Usage Patterns: Caucasian women and women of color used CHESS equally frequently (5.9 and 6.2 times per week respectively). Discussion group accounted for 68% of Caucasian women's use, and 38% for women of color. Use of CHESS information services was equal for the groups, although women of color used the self-tracking and decision services considerably more than Caucasian women (over four hours during the study vs. just under one hour).

Overview

Informal caregivers need information, skills and emotional support to address physical, spiritual, and emotional needs associated with chronic illnesses including late stage cancer. Unfortunately, current conditions force clinicians to reduce interaction time with patients and informal caregivers. Complimentary methods must be developed to provide needed information and support to caregivers. The proposed research will measure and explain the impact of two computer-based support systems that meet caregiver needs and facilitate information exchange with clinicians.

The Need

The diagnosis of cancer often inflicts fear in the caregivers of the newly diagnosed , and despair and hopelessness in those living with advanced cancer. About 500,000 US residents die each year of cancer – 25% (125,000) from breast and prostate cancer. But while much effort has gone into preventing disease (e.g., tobacco cessation), preventing advanced disease (e.g., screening mammography), and preventing death (e.g., chemotherapy), little effort goes into preventing suffering: palliative care. Yet surviving cancer often inflicts great suffering not only on patients but also informal caregivers who feel impotent to relieve it. Caregivers have many symptoms and concerns they are afraid to even address ranging from suicide to practical caregiving issues, to myths about what can and cannot be done as part of palliative care to spirituality issues.

Timely communication between clinicians and caregivers in late-stage cancer can help clinicians improve patients’ and caregivers' situations by: facilitating information exchange that leads to adjustments in symptom treatment, establishing a good interpersonal relationship that facilitates discussion about existential issues involved in death and dying, and facilitating desired participation in care and decision-making. Conversely, breakdowns in information exchange increase healthcare costs and unnecessary suffering. Substantial evidence points to the damaging effects of not providing informal caregivers the information and support they need. In fact elderly caregivers who experience strain had a 63% higher mortality risk than controls. Moreover, caregivers’ information and support needs change as key events occur.

Many caregivers (as well as patients) do not share concerns with the clinical team and when they do, they may omit psychosocial issues that are very important in palliative care. Several factors contribute to this breakdown. Many caregivers and patients believe that pain, grief, anger, and suffering are inevitable with cancer. Others believe that clinicians do not want to address such issues. They are often right. Many clinicians:

  1. Feel pressured to spend less time with their patients.
  2. Do not want to know how the patient is doing because they believe it will create more work.
  3. Feel they are already doing a good job of information sharing when they are not and/or.
  4. Believe it is not their job to talk about emotional and spiritual aspects of cancer and dying.

While improvements are needed in information sharing and support, interventions have had mixed success. There is reason to believe that CHESS-like systems can provide information and support that can help caregivers resolve concerns on their own. Such support can free time for clinicians to communicate with individual caregivers and patients about deeper concerns. For instance, CHESS can collect caregiver-patient information, share it with the clinician, and suggest questions to the patient or caregiver to raise with the clinician.

Details

CHESS (Comprehensive Health Enhancement Support System) is a non-commercial computer system that provides patients with disease specific information, emotional support and skills building tools. In the expanded form to be tested here CHESS with Caregiver Support (CGCHESS) will also provide the caregiver with more information, support and skills training related to palliative care. CGCHESS will be further enhanced to communicate essential patient and caregiver information to clinicians prior to a scheduled clinic visit and when patient symptoms exceed a threshold.

Using as recruitment sites the University of Wisconsin Comprehensive Cancer Centers in Madison and Hartford Hospital 250 caregivers of advanced breast and prostate cancer patients will be randomly assigned to: 1) Caregiver CHESS (CGCHESS) designed to support both patients and caregivers and 2) Caregiver CHESS with Clinician Report (CGCHESS+CR). Inclusion of breast and prostate cancer patients will provide caregivers of both genders. Our primary hypothesis is that CGCHESS+CR will reduce caregiver burden more than CGCHESS. Secondary analyses will explore possible mechanisms underlying the effects of CHESS. Specifically we anticipate that CHESS effect on caregivers will be mediated by CHESS effect on interaction patterns with clinicians, satisfaction with clinical visits and by CHESS effect on four patient outcomes (quality of life, negative affect, average severity of nine common late-stage cancer.

Principal Investigators:
David Gustafson Sr., Ph.D
Contact:

While improvements are needed in information sharing and support, interventions have had mixed success. There is reason to believe that CHESS-like systems can provide information and support that can help caregivers resolve concerns on their own. Such support can free time for clinicians to communicate with individual caregivers and patients about deeper concerns. For instance, CHESS For instance, CHESS