Caring for women with ovarian cancer in the last year of life: A longitudinal study of caregiver quality of life, distress and unmet needs
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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DOI：
10.1016/j.ygyno.2014.01.002
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发表时间：
2014-03-01
影响因子：
4.7
通讯作者：
Friedlander, Michael
中科院分区：
文献类型：
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作者：
Butow, Phyllis N.;Price, Melanie A.;Friedlander, Michael
目的。对照顾者的负担、生活质量(QOL)和未得到满足的需求知之甚少，特别是在生命末期。我们在卵巢癌患者的照顾者中探讨了这些问题。澳大利亚卵巢癌研究(AOCS)是一项以人群为基础的前瞻性研究，对象是新诊断为原发性卵巢上皮癌的女性。参加AOCS QOL子项研究的99名女性照顾者(88%的回应率)对她们的生活质量(SF-12)、心理困扰(HADS)、乐观(LOT)、社会支持(Duke)和未得到满足的需求(SCNS-CARERS)进行了评级，患者在两年内每三个月对他们的生活质量(FACT-O)进行一次评级。这项分析包括患者生命最后一年的测量结果。照顾者的心理和身体生活质量显著低于人群常模(p<；0.01)。平均痛苦(p=0.10)和未满足的需求随着时间的推移而增加，然而社会支持在线性混合模型中保持不变(使用每个心理社会变量随时间的分数)、乐观(p<；0.0001)、社会支持(p<；0.0001)、更高的未满足的需求(p=0.008)、身体健康(p<；0.0001)和死亡时间(p<；0.0001)，但不是病人的生活质量，预测照顾者的心理健康和痛苦。过去6个月未得到满足的最高需求涉及管理对预后的情绪、对癌症扩散的恐惧、平衡自己和患者的需求、护理对工作的影响以及在不确定的情况下做出决定。照顾者功能的各个方面，而不是病人的生活质量，会预测照顾者的生活质量和痛苦。当存在不确定性时，护理人员需要帮助管理关于预后的情绪，平衡自己和患者的需求、工作和决策。(C)2014 Elsevier Inc.保留所有权利。
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. (C) 2014 Elsevier Inc. All rights reserved.