Caring for women with ovarian cancer in the last year of their life: Impact on the caregiver. (#151)
Caring for a patient with ovarian cancer is a demanding task, particularly in the last year of life. Yet little is known about the quality of life (QOL) and specific needs of caregivers at this time.
Caregivers were recruited as part of the Australian Ovarian Cancer Study (AOCS) QOL sub-study. AOCS is a prospective population-based study that recruited women aged 18–79 years newly diagnosed with primary epithelial ovarian cancer (including fallopian tube and primary peritoneal cancer) from major Australian treatment centres and state-based registries from 2002-2006. Caregivers completed measures every 3 months till the patient’s death.
Ninety-nine participants completed at least one assessment in the patient’s last year of life, with 203 measurement points in total. Many caregivers had low mental wellbeing (SF-12v2), compared to the population norm of 16%, (30-39% over the year, p<0.01), and lower physical wellbeing at 4-6 months only (30%, p=0.01). Distress (HADS) steadily increased over the year (p=.008) but social support (Duke) remained constant. Social support and caregiver optimism (LOT-R) predicted distress. Strongest unmet needs (SCNS-Carers) in the last months of life were for help with disappointment about lack of recovery, fear of the cancer spreading, balancing own needs with those of the patient’s, impact of caring on work activities and making decisions in the context of uncertainty. Interestingly, working through feelings about death and dying were amongst the top five unmet needs only at the beginning of the year, suggesting a relatively early acknowledgement of approaching death.
Many caregivers of women with ovarian cancer in the last year of life experience poor mental and physical QOL and have high levels of unmet needs. Greater support from both family and friends and the health system is needed at this time.