Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers
Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers
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DOI：
10.1503/cmaj.1031205
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发表时间：
2004-06-08
影响因子：
14.6
通讯作者：
Glossop, R
中科院分区：
文献类型：
--
作者：
Grunfeld, E;Coyle, D;Glossop, R
背景：家庭照顾者在支持垂死癌症患者方面的重要作用已得到充分认识，但对照顾者的负担和经济影响知之甚少。我们前瞻性地研究了照顾绝症患者的社会心理、职业和经济影响。方法：我们研究了89名在安大略省渥太华或汉密尔顿地区癌症中心接受治疗的晚期乳腺癌妇女的护理人员。随访患者至死亡或研究结束3年。患者确定了一名主要护理人员参与这项研究。随访期间采用Karnofsky绩效状态（KPS）指数、医疗结局研究36项短表（SF-36）、医院焦虑抑郁量表、Zarit负担量表、FAMCARE和医疗结局研究社会支持调查。经济数据是通过一份由采访者管理的问卷收集的。姑息期每3个月评估一次（KPS评分为50分），末期每2周评估一次（KPS评分小于等于50分）。结果：超过一半的护理人员为男性（55%）和患者的配偶或伴侣（52%），平均年龄53岁。在姑息期开始时，护理人员的平均身体功能评分优于患者（51.3 vs 35.1, 95%可信区间[CI] 13.3 ~ 20.0）；平均心理功能评分相似（分别为46.6分和47.1分）；抑郁的比例相似（11%和12%）；焦虑的护理人员明显多于患者（35% vs 19%, p = 0.009）。与缓和期开始时相比，更多的照顾者在末期开始时抑郁（30% vs . 9%, p = 0.02），并且有更高水平的感知负担（26.2 vs . 19.4, p = 0.02）。负担是焦虑和抑郁最重要的预测因素。在受雇的护理人员中，69%的人表示对工作有某种形式的不利影响。在最后一段时间，77%的人表示因为照顾孩子的责任而失去了工作。处方药是经济负担的最重要组成部分。解释：随着患者功能状态的下降，护理者的抑郁和感知负担增加。需要制定战略，帮助减轻与照护相关的社会心理、职业和经济负担。
Background: The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness.Methods: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score less than or equal to 50).Results: Over half of the caregivers were male (55%) and the patient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean physical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3-20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11 % and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden.Interpretation: Caregivers' depression and perceived burden increase as patients' functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving.