A systematic literature review of the prevalence of and risk factors for supportive care needs among women with gynaecological cancer and their caregivers

Vanessa L. Beesley, Chalachew Alemayehu, Penelope M. Webb

This review aimed to determine the prevalence of met and unmet needs, and the risk factors for unmet needs among people affected by gynaecological cancer. The review was undertaken using the PRISMA guidelines. Eligible studies were identified though a range of electronic databases in October and November 2016. Study quality was independently appraised by two people. Thirty-seven studies were included (1 review, 24 quantitative and 12 qualitative). The evidence was of mixed quality. The total burden of needs affecting women with gynaecological cancer and also their caregivers predominately related to comprehensive care and psychological concerns. The major moderate-to-high-level unmet needs of women with gynaecological cancer were for help explicitly with fear of recurrence, worries of caregivers and fatigue, and for women who developed lymphoedema were with pain and associated costs. Qualitative studies identified disease-specific needs related to sexuality issues (including fertility, sexual functioning, relationship concerns, managing vaginal changes, pregnancy care, premature menopause), genetic testing and disease-specific peer support. Women at risk of having unmet needs include those who are younger, with advanced disease, with lymphoedema or a high symptom burden, are unable to work, have mental health issues, have poor social support or live in rural or remote locations. Understanding the needs of women with gynaecological cancer and their caregivers is essential to improving care and outcomes. Current data are limited thus there is a need for qualitative studies of patient-caregiver dyad and vulnerable subgroups and well-designed quantitative studies of women with each type of gynaecological and their caregivers.