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 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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 690-697 |
| Number of pages | 8 |
| Journal | Gynecologic Oncology |
| Volume | 132 |
| Issue number | 3 |
| DOIs | |
| State | Published - 2014 |
| Externally published | Yes |
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Keywords
- Caregivers
- End of life
- Ovarian cancer
- Prospective
- Quality of life
- Unmet needs
ASJC Scopus subject areas
- Obstetrics and Gynecology
- Oncology
Cite this
Caring for women with ovarian cancer in the last year of life : A longitudinal study of caregiver quality of life, distress and unmet needs. / Butow, Phyllis N.; Price, Melanie A.; Bell, Melanie L; Webb, Penelope M.; Defazio, Anna; Friedlander, Michael.
In: Gynecologic Oncology, Vol. 132, No. 3, 2014, p. 690-697.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Caring for women with ovarian cancer in the last year of life
T2 - A longitudinal study of caregiver quality of life, distress and unmet needs
AU - Butow, Phyllis N.
AU - Price, Melanie A.
AU - Bell, Melanie L
AU - Webb, Penelope M.
AU - Defazio, Anna
AU - Friedlander, Michael
PY - 2014
Y1 - 2014
N2 - 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.
AB - 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.
KW - Caregivers
KW - End of life
KW - Ovarian cancer
KW - Prospective
KW - Quality of life
KW - Unmet needs
UR - http://www.scopus.com/inward/record.url?scp=84896398780&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84896398780&partnerID=8YFLogxK
U2 - 10.1016/j.ygyno.2014.01.002
DO - 10.1016/j.ygyno.2014.01.002
M3 - Article
C2 - 24423880
AN - SCOPUS:84896398780
VL - 132
SP - 690
EP - 697
JO - Gynecologic Oncology
JF - Gynecologic Oncology
SN - 0090-8258
IS - 3
ER -