Changes in supportive care needs after first-line treatment for ovarian cancer: Identifying care priorities and risk factors for future unmet needs

Objective: The objective of this paper is to determine changes in supportive care needs after first-line treatment for ovarian cancer and identify risk factors for future unmet needs. Methods: Two hundred and nineteen women with ovarian cancer were asked to complete a baseline survey 6-12 months after diagnosis then follow-up surveys every 6 months for up to 2 years. The validated Supportive Care Needs Survey-Short Form measured 34 needs across five domains. Logistic regression identified baseline variables associated with future needs. Results: At baseline, standardized median scores (possible range 0-100, least-to-greatest need) within the psychological, system/information, physical, patient care and sexuality need domains were 25, 20, 15, 15 and 8, respectively. The most frequently reported moderate-to-high unmet needs at baseline were needing help with fear about cancer spreading (25%), concerns about worries of those close (20%), being informed about things to help get well (20%), uncertainty about future (19%) and lack of energy (18%). All except the item about being informed were still reported as unmet needs by ≥15% of women 2 years later. Median health system/information, patient care and sexuality need scores decreased over 2 years (p < 0.05), whereas psychological and physical scores remained constant. Risk factors for having ≥1 moderate-to-high unmet overall, psychological or physical need 1-2 years after baseline included older age, advanced disease, unmet need, anxiety, depression, insomnia and less social support at baseline. Conclusion: Women with ovarian cancer report needing ongoing assistance to deal with psychological and physical needs over the first 2 years after first-line treatment. Targeting individuals at risk of future unmet needs should be prioritized

Caring for women with ovarian cancer in the last year of life: A longitudinal study of caregiver quality of life, distress and unmet 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 (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