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Grant Details

Grant Number: 5R01NR008260-05 Interpret this number
Primary Investigator: Gustafson, David
Organization: University Of Wisconsin-Madison
Project Title: Web-Based Support for Informal Caregivers in Cancer
Fiscal Year: 2006


DESCRIPTION (provided by applicant): 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 system, 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 Milwaukee, 300 caregivers (33% minorities) of advanced breast and prostate cancer patients will be randomly assigned to: 1) Control group given usual care, 2) Caregiver CHESS (CGCHESS) designed to support both patients and caregivers and 3) 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 will significantly improve caregiver burden, affect, coping self-efficacy and information competence because of the information, skills building and emotional support CHESS offers to caregivers. We also hypothesize that CGCHESS+CR will improve the outcomes more and that minority caregivers will benefit more than Caucasians. Our process analyses will study the mechanisms of CHESS effect.


Trajectories of social resource use among informal lung cancer caregivers.
Authors: Litzelman K. , Reblin M. , McDowell H.E. , DuBenske L.L. .
Source: Cancer, 2020-01-15; 126(2), p. 425-431.
EPub date: 2019-10-18.
PMID: 31626343
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Reducing Symptom Distress in Patients With Advanced Cancer Using an e-Alert System for Caregivers: Pooled Analysis of Two Randomized Clinical Trials.
Authors: Gustafson D.H. , DuBenske L.L. , Atwood A.K. , Chih M.Y. , Johnson R.A. , McTavish F. , Quanbeck A. , Brown R.L. , Cleary J.F. , Shah D. .
Source: Journal of medical Internet research, 2017-11-14; 19(11), p. e354.
EPub date: 2017-11-14.
PMID: 29138131
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Communicating advanced cancer patients' symptoms via the Internet: a pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood.
Authors: Chih M.Y. , DuBenske L.L. , Hawkins R.P. , Brown R.L. , Dinauer S.K. , Cleary J.F. , Gustafson D.H. .
Source: Palliative medicine, 2013 Jun; 27(6), p. 533-43.
EPub date: 2012-09-17.
PMID: 22988042
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Caregivers' participation in the oncology clinic visit mediates the relationship between their information competence and their need fulfillment and clinic visit satisfaction.
Authors: DuBenske L.L. , Chih M.Y. , Gustafson D.H. , Dinauer S. , Cleary J.F. .
Source: Patient education and counseling, 2010 Dec; 81 Suppl, p. S94-9.
EPub date: 2010-09-28.
PMID: 20880656
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Web-based cancer communication and decision making systems: connecting patients, caregivers, and clinicians for improved health outcomes.
Authors: DuBenske L.L. , Gustafson D.H. , Shaw B.R. , Cleary J.F. .
Source: Medical decision making : an international journal of the Society for Medical Decision Making, 2010 Nov-Dec; 30(6), p. 732-44.
EPub date: 2010-11-01.
PMID: 21041539
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Psychometric evaluation of the Health Information Orientation Scale: a brief measure for assessing health information engagement and apprehension.
Authors: DuBenske L.L. , Burke Beckjord E. , Hawkins R.P. , Gustafson D.H. .
Source: Journal of health psychology, 2009 Sep; 14(6), p. 721-30.
PMID: 19687109
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Caregivers' differing needs across key experiences of the advanced cancer disease trajectory.
Authors: DuBenske L.L. , Wen K.Y. , Gustafson D.H. , Guarnaccia C.A. , Cleary J.F. , Dinauer S.K. , McTavish F.M. .
Source: Palliative & supportive care, 2008 Sep; 6(3), p. 265-72.
PMID: 18662420
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Development and implementation of a clinician reporting system for advanced stage cancer: initial lessons learned.
Authors: Dubenske L.L. , Chih M.Y. , Dinauer S. , Gustafson D.H. , Cleary J.F. .
Source: Journal of the American Medical Informatics Association : JAMIA, 2008 Sep-Oct; 15(5), p. 679-86.
EPub date: 2008-06-25.
PMID: 18579837
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Patient/Caregiver influences for declining participation in supportive oncology trials.
Authors: Buss M.K. , DuBenske L.L. , Dinauer S. , Gustafson D.H. , McTavish F. , Cleary J.F. .
Source: The journal of supportive oncology, 2008 Apr; 6(4), p. 168-74.
PMID: 18491685
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