Cancer and AIDS impose long-term stress suffering for individuals with these diseases and their families. The SUPPORT study focuses national attention on quality of life across the illness/dying trajectory and the need to examine the disease specific interventions, and the palliative interventions that are offered across the continuum of care. The objectives of this pilot study are to: 1) test the feasibility of conducting a longitudinal study of 40 patient/family caregiver dyads experiencing advanced cancer or AIDS given the vulnerability of this population; 2) obtain preliminary data regarding the changes/patterns in quality of life of patients with advanced cancer or AIDS and their family caregivers from the time of diagnosis with advanced disease, until death, and into the bereavement period for family caregivers (illness/dying trajectory); 3) explore whether patients or family caregivers experiencing advanced cancer and AIDS are comparable based on contextual/demographic factors, and in terms of changes/patterns in their quality of life; 4) evaluate the sensitivity and reliability of measures to examine quality of life of the patient/family dyads; and 5) pilot test the Continuum of Palliative Care Intervention Inventory (CPCII) to evaluate its ability to document palliative care interventions for patients and family caregivers across the illness/dying trajectory, and develop descriptive aggregate profiles of interventions across the illness/dying trajectory. This pilot study will use a longitudinal, prospective design, in which patients with advanced cancer or AIDS and their family caregivers are followed from the time of diagnosis with advanced disease for approximately one year or until death, and into the bereavement period for family caregivers. Quality of life of patients and family caregivers will be measured by multidimensional instruments, and unidimensional, self-report measures. The CPCII will be pilot tested to obtain information regarding the physical, emotional, social, and spiritual interventions that are offered, received, or desired across the illness/dying trajectory by patients and family caregivers. For preliminary evaluation of the changes/patterns in the quality of life of patients and family caregivers, and evaluation of the sensitivity of the instruments, a model for repeated measurement data, specifically a random coefficient model will be used. Cronbach's alpha coefficients will be calculated for each instrument to determine their reliability with each group. The CPCII will be evaluated for its comprehensiveness regarding intervention information, and ability to develop descriptive aggregate profiles of interventions. Pearson correlations or one-way ANOVAs will be used to examine the relationship of contextual/demographic factors to quality of life and interventions provided.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel (ZRG1-AARR-8 (01))
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O'Mara, Ann M
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New York University
Schools of Nursing
New York
United States
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