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abstract:
Caring for women with ovarian cancer in the last year of life: A longitudinal study of caregiver quality of life, distress and unmet needs
Highlights
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- In the last year of life, ovarian cancer caregivers have higher distress and lower QOL than age-matched norms.
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- Cancer services need to address caregiver, as well as patient, needs.
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. Mean distress and unmet needs increased over
time, however social support remained constant. In linear mixed models,
(using scores for each psychosocial variable over time), optimism, social support, higher unmet needs, physical wellbeing, and time to death 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.
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