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

Phyllis N. Butow, Melanie A. Price, Melanie L Bell, Penelope M. Webb, Anna Defazio, Michael Friedlander

Research output: Contribution to journalArticle

42 Citations (Scopus)

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 languageEnglish (US)
Pages (from-to)690-697
Number of pages8
JournalGynecologic Oncology
Volume132
Issue number3
DOIs
StatePublished - 2014
Externally publishedYes

Fingerprint

Ovarian Neoplasms
Caregivers
Longitudinal Studies
Quality of Life
Social Support
Uncertainty
Decision Making
Emotions
Population
Fear
Linear Models
Psychology

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 journalArticle

Butow, Phyllis N. ; Price, Melanie A. ; Bell, Melanie L ; Webb, Penelope M. ; Defazio, Anna ; Friedlander, Michael. / Caring for women with ovarian cancer in the last year of life : A longitudinal study of caregiver quality of life, distress and unmet needs. In: Gynecologic Oncology. 2014 ; Vol. 132, No. 3. pp. 690-697.
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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 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.",
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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.

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