Department of Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, Bessemer Road, London, SE5 9PJ, UK.
King's College Hospital Foundation Trust, Bessemer Road, London, SE5 9PJ, UK.
BMC Med. 2020 Nov 3;18(1):344. doi: 10.1186/s12916-020-01768-7.
BACKGROUND: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. METHODS: Mortality follow-back postal survey. SETTING: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). PARTICIPANTS: Informal carers (ICrs) of decedents who had received palliative care. DATA: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). ANALYSIS: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. RESULTS: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. CONCLUSIONS: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
背景：在生命末期，正规护理费用高昂。然而，非正式护理（IC）的成本及其对结果的影响尚不清楚。本研究旨在确定生命最后 3 个月的老年患者的 IC 成本，并在调整护理质量后，研究其与结果的关系。
方法：采用死亡后回溯式邮寄问卷调查。
地点：英国（伦敦）、爱尔兰（都柏林）和美国（纽约、旧金山）的姑息治疗服务机构。
参与者：接受姑息治疗的已故患者的非正式照护者（ICr）。
数据：ICr 报告了时间和活动、护理质量、照护的积极方面和负担以及完成德克萨斯州修订后的悲伤量表（TRIG）。
分析：所有成本（正式、非正式）均通过乘以该活动在各国的时间报告乘以各国的影子价格计算。IC 成本使用国家特定的影子价格，例如护理服务的平均小时工资和单位成本。多变量逻辑回归分析探讨了潜在解释变量（包括 IC 成本和护理质量）与三个结果之间的关联：照护的积极方面和负担，以及随后的悲伤。
结果：我们收到了 767 份完整的调查问卷，其中 245 份来自伦敦，282 份来自都柏林，131 份来自纽约，109 份来自旧金山。大多数受访者为女性（70%）；平均年龄为 60 岁。平均而言，患者每周接受 ICr 66-76 小时的随叫随到服务，52-55 小时的陪伴，19-21 小时的个人护理，17-21 小时的家务劳动，15-18 小时的医疗程序和 7-10 小时的预约。IC 成本的平均值（标准差）如下：美国 32468 美元（28578 美元）、英国 36170 美元（31104 美元）和爱尔兰 43760 美元（36930 美元）。IC 成本占总（正式加非正式）成本的 58%。较高的 IC 成本与较少的悲伤和对护理的更积极看法相关。较差的家庭护理与更大的照顾者负担相关。
结论：在生命的最后三个月，非正式护理者的成本高于正式护理服务。如果得到良好支持，非正式护理者可以在不损害自身利益的情况下为患者提供护理，并且只要他们得到帮助，就可以发挥作用。改善社区姑息治疗和非正式护理者支持应该是未来投资的重点。
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