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.
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.
Gynecol Oncol. 2014 Mar;132(3):690-7. doi: 10.1016/j.ygyno.2014.01.002. Epub 2014 Jan 11.
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.
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.
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.
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.
照顾者负担、生活质量（QOL）和未满足的需求在生命末期尚未得到充分了解。我们在卵巢癌女性的照顾者中探讨了这些问题。
澳大利亚卵巢癌研究（AOCS）是一项针对新诊断为原发性上皮性卵巢癌的女性的前瞻性基于人群的研究。参与 AOCS QOL 子研究的 99 名女性照顾者（88%的回应率）使用 SF-12 量表评估了他们的生活质量，使用 HADS 量表评估了他们的心理困扰，使用 LOT 量表评估了他们的乐观程度，使用 Duke 量表评估了他们的社会支持，使用 SCNS-carers 量表评估了他们的未满足需求，患者使用 FACT-O 量表评估了他们的生活质量，每三个月评估一次，为期两年。这项分析包括患者生命的最后一年的测量结果。
照顾者的心理和生理生活质量明显低于人口正常值（p<0.01）。随着时间的推移，平均困扰（p=0.01）和未满足需求增加，但社会支持保持不变。在线性混合模型中（使用每个心理社会变量随时间的评分），乐观程度（p<0.0001）、社会支持（p<0.0001）、更高的未满足需求（p=0.008）、身体福利（p<0.0001）和死亡时间（p<0.0001），但不是患者的生活质量，预测了照顾者的心理幸福感和困扰。在最后 6 个月中，最高的未满足需求与管理预后情绪、对癌症扩散的恐惧、平衡自己和患者的需求、照顾对工作的影响以及在不确定的情况下做出决策有关。
照顾者功能的各个方面，而不是患者的生活质量，预测了照顾者的生活质量和困扰。当存在不确定性时，照顾者需要帮助管理对预后的情绪、平衡自己和患者的需求、工作和决策。
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