Despite recent advances in cancer detection and treatment, each year more than half a million cancer patients die from their disease. Patient's and families who are living with terminal cancer often encounter emotional distress, unmet needs, increasing physical limitations, symptomatic discomfort, and financial burdens. Despite the importance of caregivers in the care of patients with advanced cancer, there is a paucity of research describing the longitudinal outcomes of caregivers over the continuum of care from active patient illness to death, bereavement, and post bereavement. To begin to fill these important knowledge gaps, a multidisciplinary research team from Lombardi Cancer Center will use a conceptual framework of the caregiving experience to conduct a longitudinal cohort study of caregivers of terminally ill cancer patients. The primary objectives of this study are to use a conceptual model of caregiving: 1) to describe caregiver burden and health outcomes over the continuum of care and 2) to address methodological issues associated with longitudinal research in this setting. We will conduct phased research to achieve these goals. In the first phase of the project, we will conduct six focus groups with individuals who are either active caregivers or bereaved. In the second phase of the project, we will use these data to conduct a longitudinal cohort study. The cohort will consist of nearly 300 caregivers of advanced gastrointestinal, lung, and breast cancer patients. Caregivers will be interviewed at enrollment, 2 and 4 months post-enrollment, and 3, 6, and 13 months post-bereavement. The results of this project will serve as a framework for the development of future interventions to improve the quality of care for cancer patients and their families. In addition, approaches developed in this project should be broadly portable to studying the caregiver experience in caring for patients with other types of chronic and terminal illnesses.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel (ZRG1-NURS (01))
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Varricchio, Claudette
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Georgetown University
Internal Medicine/Medicine
Schools of Medicine
United States
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Fleming, David A; Sheppard, Vanessa B; Mangan, Patricia A et al. (2006) Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers. J Pain Symptom Manage 31:407-20
Yabroff, K Robin; Mandelblatt, Jeanne S; Ingham, Jane (2004) The quality of medical care at the end-of-life in the USA: existing barriers and examples of process and outcome measures. Palliat Med 18:202-16
Deeken, John F; Taylor, Kathryn L; Mangan, Patricia et al. (2003) Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manage 26:922-53
Mangan, Patricia A; Taylor, Kathryn L; Yabroff, K Robin et al. (2003) Caregiving near the end of life: unmet needs and potential solutions. Palliat Support Care 1:247-59