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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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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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Acknowledgments

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.

Funding

This work was funded by the Australian Government through Cancer Australia.

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Authors and Affiliations

  1. Gynaecological Cancers Group, QIMR Berghofer Medical Research Institute, Locked Bag 2000 Royal Brisbane Hospital, Brisbane, QLD, 4029, Australia

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

  2. School of Public Health and Social Work, Queensland University of Technology, Brisbane, Australia

    Vanessa L. Beesley

  3. Faculty of Medicine, University of Queensland, Brisbane, Australia

    Chalachew Alemayehu & Penelope M. Webb

Authors
  1. Vanessa L. Beesley
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  2. Chalachew Alemayehu
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Correspondence to Vanessa L. Beesley.

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Beesley, V.L., Alemayehu, C. & Webb, P.M. A systematic literature review of the prevalence of and risk factors for supportive care needs among women with gynaecological cancer and their caregivers. Support Care Cancer 26, 701–710 (2018). https://doi.org/10.1007/s00520-017-3971-6

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  • DOI: https://doi.org/10.1007/s00520-017-3971-6

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