title: Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs.
abstract: OBJECTIVE
  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.
  
  
  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.
authors.affiliation: Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, Sydney, Australia; Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Australia. Electronic address: phyllis.butow@sydney.edu.au.
authors.forename: Phyllis N
authors.initials: PN
authors.lastname: Butow
authors.affiliation: Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, Sydney, Australia; Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Australia.
authors.forename: Melanie A
authors.initials: MA
authors.lastname: Price
authors.affiliation: Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Australia.
authors.forename: Melanie L
authors.initials: ML
authors.lastname: Bell
authors.affiliation: QIMR Berghofer Institute of Medical Research, Gynaecological Cancers Group, Brisbane, Australia.
authors.forename: Penelope M
authors.initials: PM
authors.lastname: Webb
authors.affiliation: Department of Gynaecological Oncology, Westmead Hospital and Westmead Institute for Cancer Research, The University of Sydney at Westmead Millennium Institute, Westmead, Australia.
authors.forename: Anna
authors.initials: A
authors.lastname: deFazio
authors.affiliation: QIMR Berghofer Institute of Medical Research, Gynaecological Cancers Group, Brisbane, Australia; Department of Gynaecological Oncology, Westmead Hospital and Westmead Institute for Cancer Research, The University of Sydney at Westmead Millennium Institute, Westmead, Australia; Peter MacCallum Cancer Centre, Melbourne, Australia.
authors.affiliation: Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, Sydney, Australia; Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Australia; QIMR Berghofer Institute of Medical Research, Gynaecological Cancers Group, Brisbane, Australia.
authors.affiliation: Australia New Zealand Gynaecological Oncology Group (ANZGOG), NHMRC Clinical Trials Centre, The University of Sydney, Camperdown, Australia; Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia.
authors.forename: Michael
authors.initials: M
authors.lastname: Friedlander
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D000077216:Carcinoma, Ovarian Epithelial; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009375:Neoplasms, Glandular and Epithelial / Q000523:psychology* / Q000628:therapy*; D010051:Ovarian Neoplasms / Q000523:psychology* / Q000628:therapy*; D011446:Prospective Studies; D011788:Quality of Life; D013727:Terminal Care / Q000523:psychology*
keywords: Caregivers; End of life; Ovarian cancer; Prospective; Quality of life; Unmet needs