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Cited by 119Palliative Care and End-of-Life IssuesCancer survivorship and carePalliative and Oncologic Care

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

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Butow, Phyllis N., The Australian Ovarian Cancer Study Group, Price, Melanie A., Bell, Melanie L., Webb, Penelope M., deFazio, Anna, The Australian Ovarian Cancer Study Quality of Life Study Investigators, Friedlander, Michael·2014·Gynecologic Oncology
DOI 10.1016/j.ygyno.2014.01.002
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Abstract

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 6months 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.

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  1. Price, 2010, The Australian Ovarian Cancer Study Group, The Australian Ovarian Cancer Study Group — Quality of Life Study Investigators. Prevalence and predictors of anxiety and depression in women with invasive ovarian cancer and their carers, Med J Aust, 193

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Authors
Butow, P. N., The Australian Ovarian Cancer Study Group, Price, M. A., Bell, M. L., Webb, P. M., deFazio, A., The Australian Ovarian Cancer Study Quality of Life Study Investigators, & Friedlander, M.
Affiliations
The University of Sydney (AU)
Corresponding author
Butow, Phyllis N.
ORCID
Venue
Gynecologic Oncology
Publisher
Elsevier BV
Published
2014-03
Volume
132
Issue
3
Pages
690-697
ISSN
0090-8258 (ISSN-L)
DOI
10.1016/j.ygyno.2014.01.002
OpenAlex
W1991232779
Cited by
119
References
23
Citations by year
2026: 4 · 2025: 7 · 2024: 8 · 2023: 5 · 2022: 9 · 2021: 17 · 2020: 15 · 2019: 16 · 2018: 6 · 2017: 13 · 2016: 12 · 2015: 5 · 2014: 2
FWCI
10.56
Type
journal article
Language
en
Open access
Licence
www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations
  • Gynecologic Oncology (publishedVersion)
  • PubMed (publishedVersion)
  • The Sydney eScholarship Repository (The University of Sydney) (submittedVersion)
Funders
  • University of Sydney
  • Medical Research Council
  • National Health and Medical Research Council (199600, 400281, 211199, 400413)
  • Cancer Council NSW
  • Medical Research and Materiel Command (DAMD17-01–1-0729)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Keywords
caregiver quality of life, caregiver distress, unmet needs, ovarian cancer, end-of-life care, family caregivers, psychological distress, social support, optimism, time to death, decision making under uncertainty, work-family balance
MeSH terms
Carcinoma, Ovarian Epithelial, Adult, Aged, Australia, Female, Health Services Needs and Demand, Humans, Longitudinal Studies, Male, Middle Aged, Neoplasms, Glandular and Epithelial, Ovarian Neoplasms, Prospective Studies, Quality of Life, Terminal Care, Caregivers, Needs Assessment

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