A systematic literature review of the prevalence of and risk factors for supportive care needs among women with gynaecological cancer and their caregivers
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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.
KeywordsGynaecological cancer Caregivers Supportive care needs Unmet needs Risk factors
We thank the Project Working Group members including Chair, Professor Patsy Yates (Academic Nurse), Professor Susan Carr (Consultant, Sexual & Reproductive Health), Ms. Bronwyn Grout (Consumer Representative), Ms. Kim Hobbs (Clinical Specialist Social Worker), Dr. Laura Kirsten (Principal Clinical Psychologist), Ms. Tish Lancaster (Clinical Nurse Consultant) and Dr. Cath Shannon (Medical Oncologist) who provided expert guidance to support the achievement of the project objectives. We also thank the Cancer Australia staff including Jennifer Chynoweth, Caroline Nehill, Vivienne Milch, Felicity Hughes and Daisy Garling for their support of the Project Working Group and QIMR Berghofer Medical Research Institute in carrying out this project.
This work was funded by the Australian Government through Cancer Australia.
- 1.International Agency for Research on Cancer and World Health Organization (2012) GLOBOCAN 2012: estimated cancer incidence, mortality and prevalence worldwide in 2012. In: Editor (ed)^(eds) Book GLOBOCAN 2012: estimated cancer incidence, mortality and prevalence worldwide in 2012, CityGoogle Scholar
- 2.Australian Institute of Health and Welfare (2012) Gynaecological cancers in Australia: an overview. In: Editor (ed)^(eds) Book Gynaecological cancers in Australia: an overview, CityGoogle Scholar
- 3.Sankaranarayanan R, Ferlay J (2010) Worldwide burden of gynaecological cancer Handbook of Disease Burdens and Quality of Life Measures: 803–823Google Scholar
- 4.Cancer Australia (2016) National framework for gynaecological cancer control. In: Editor (ed)^(eds) Book national framework for gynaecological cancer control. Cancer Australia, CityGoogle Scholar
- 5.Teskereci G, Kulakaç O (2016) Life experiences of caregivers of women with gynaecological cancer: a mixed-methods systematic review. Eur J Cancer Care (Engl)Google Scholar
- 6.Hui D (2014) Definition of supportive care: does the semantic matter? Curr Opin Oncol 26:372–379Google Scholar
- 7.Bonevski B, Sanson-Fisher R, Hersey P, Paul C, Foot G (1999) Assessing the Perceived Needs of Patients Attending an Outpatient Melanoma Clinic. J Psychosoc Oncol 17:101–118Google Scholar
- 10.Cancer Australia (2017) Supporting women to live well with gynaecological cancers: systematic literature review. In: Editor (ed)^(eds) Book Supporting women to live well with gynaecological cancers: systematic literature review. Cancer Australia, CityGoogle Scholar
- 25.Phianmongkhol Y, Suwan N (2008) Symptom management in patients with cancer of the female reproductive system receiving chemotherapy. Asian Pac J Cancer Prev 9:741–745Google Scholar
- 26.Beaver K, Booth K (2007) Information needs and decision-making preferences: Comparing findings for gynaecological, breast and colorectal cancer. Eur J Oncol Nurs 11:409–416Google Scholar
- 27.Papadakos J, Bussière-Côté S, Abdelmutti N, Catton P, Friedman AJ, Massey C, Urowitz S, Ferguson SE (2012) Informational needs of gynecologic cancer survivors. Gynecol Oncol 124:452–457Google Scholar
- 28.Akkuzu G, Kurt G, Guvenc G, Kok G, Simsek S, Dogrusoy S, Ayhan A (2016) Learning needs of gynecologic cancer survivors. J Cancer EducGoogle Scholar
- 29.Beesley V, Eakin E, Steginga S, Aitken J, Dunn J, Battistutta D (2008) Unmet needs of gynaecological cancer survivors: implications for developing community support services. Psycho-Oncology 17:392–400Google Scholar
- 30.Beesley VL, Price MA, Webb PM, O'Rourke P, Marquart L, Butow PN (2012) Changes in supportive care needs after first-line treatment for ovarian cancer: identifying care priorities and risk factors for future unmet needs. Psycho-Oncology 22:1565–1571Google Scholar
- 31.McCallum M, Jolicoeur L, Lefebvre M, Babchishin LK, Robert-Chauret S, Le T, Lebel S (2014) Supportive Care Needs After Gynecologic Cancer: Where Does Sexual Health Fit in? Oncol Nurs Forum 41:297–306Google Scholar
- 39.Beesley VL, Rowlands IJ, Hayes SC, Janda M, O'Rourke P, Marquart L, Quinn MA, Spurdle AB, Obermair A, Brand A, Oehler MK, Leung Y, McQuire L, Webb PM (2015) Incidence, risk factors and estimates of a woman’s risk of developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer. Gynecol Oncol 136:87–93CrossRefPubMedGoogle Scholar
- 43.Nicolaije KAH, Husson O, Ezendam NPM, Vos MC, Kruitwagen RFPM, Lybeert MLM, van de Poll-Franse LV (2012) Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: a study from the population-based PROFILES registry. Patient Educ Couns 88:427–435CrossRefPubMedGoogle Scholar