Journal
GYNECOLOGIC ONCOLOGY
Volume 132, Issue 3, Pages 690-697Publisher
ACADEMIC PRESS INC ELSEVIER SCIENCE
DOI: 10.1016/j.ygyno.2014.01.002
Keywords
Caregivers; Ovarian cancer; End of life; Quality of life; Unmet needs; Prospective
Categories
Funding
- Cancer Council New South Wales
- Queensland Cancer Fund [RG 36/05]
- U.S. Army Medical Research and Materiel Command [DAMD17-01-1-0729]
- National Health and Medical Research Council of Australia [400413, 400281, 199600]
- Cancer Council of New South Wales
- Cancer Council of Queensland
- Cancer Council of South Australia
- Cancer Council of Tasmania
- Cancer Council of Victoria
- Cancer Foundation of Western Australia
- National Health and Medical Research Council of Australia Principal Research Fellowship [211199, 457093]
- National Health and Medical Research Council of Australia
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Purpose. Caregiver burden, quality of life (QOL) and unmet needs are poorly understood, particularly at the end of life. We explored these issues in caregivers of women with ovarian cancer. Patients and methods. The Australian Ovarian Cancer Study (AOCS) is a prospective population-based study of women newly diagnosed with primary epithelial ovarian cancer. Ninety-nine caregivers of women participating in the AOCS QOL sub-study (88% response rate) rated their QOL (SF-12), psychological distress (HADS), optimism (LOT), social support (Duke) and unmet needs (SCNS-carers), and patients rated their QOL (FACT-O), every three months for two years. This analysis included measurements in the patient's last year of life. Results. Caregivers had significantly lower mental and physical QOL than population norms (p < 0.01). Mean distress (p = 0.01) and unmet needs increased over time, however social support remained constant In linear mixed models, (using scores for each psychosocial variable over time), optimism (p < 0.0001), social support (p < 0.0001), higher unmet needs (p = 0.008), physical wellbeing (p < 0.0001), and time to death (p < 0.0001) but not patient QOL, predicted caregiver mental well-being and distress. Highest unmet needs in the last 6 months related to managing emotions about prognosis, fear of cancer spread, balancing one's own and the patient's needs, impact of caring on work and making decisions in the context of uncertainty. Conclusions. Aspects of caregiver functioning, rather than patient quality of life, predict caregiver quality of life and distress. Caregivers need help with managing emotions about prognosis, balancing their own and the patient's needs, work, and decision-making when there is uncertainty. (C) 2014 Elsevier Inc. All rights reserved.
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