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更多的照护者在家时间是否也是以家庭照护者为中心的生活质量衡量标准?

Is more care recipient time at home also a family caregiver-centered quality of life measure?

机构信息

Center of Innovation to Accelerate Discovery and Practice Transformation, Durham Veterans Affairs Medical Center, Durham, North Carolina, USA.

Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA.

出版信息

J Am Geriatr Soc. 2024 Oct;72(10):3098-3108. doi: 10.1111/jgs.19115. Epub 2024 Aug 13.


DOI:10.1111/jgs.19115
PMID:39136596
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11647572/
Abstract

BACKGROUND: Time in healthcare facilities is associated with worse patient quality of life (QoL); however, impact on family caregiver QoL is unknown. We evaluate care recipient days not at home-days in the emergency department (ED), inpatient (IP) care, and post-acute care (PAC)-to understand how care recipient days not at home correspond to family caregiver QoL. METHODS: Secondary data were linked to care recipient utilization data. Elastic net machine learning models were used to evaluate the impact of a single day of utilization in each setting on binary QoL outcomes. We also compared composite weighted and unweighted "days not at home" variables. Two time periods, 6 and 18 months, were used to predict three caregiver QoL measures (self-rated health, depressive symptoms, and subjective burden). RESULTS: In the 6-month timeframe, a single day of ED utilization was associated with increased likelihood of poor QoL for all three assessed outcomes (range: 1.4%-3.2%). A day of PAC was associated to a modest degree with increased likelihood of caregiver burden (0.2%) and depressive symptoms (0.1%), with a slight protective effect for self-rated health (-0.1%). An IP day had a slight protective effect (-0.2 to -0.1%). At 18 months, ED and IP had similar, albeit more muted, relationships with caregiver burden and depressive symptoms. PAC had a slight protective effect for caregiver burden (-0.1%). Cumulative days in all settings combined generally was not associated with caregiver QoL. CONCLUSION: Whereas total care recipient time away from home had some negative spillovers to family caregivers, the countervailing effects of unique settings on caregiver QoL may mask net QoL effects. This finding limits the utility of a single care recipient home time measure as a valid caregiver-centered measure. Considering cumulative care recipient time in individual settings separately may be needed to reveal the true net effects on caregiver QoL.

摘要

背景:患者在医疗保健机构的停留时间与较差的生活质量(QoL)相关;然而,其对家庭照顾者 QoL 的影响尚不清楚。我们评估了患者不在家的天数-急诊(ED)、住院(IP)和康复后护理(PAC)的天数-以了解患者不在家的天数与家庭照顾者 QoL 的对应关系。

方法:对护理者的利用数据进行了二次数据链接。使用弹性网络机器学习模型来评估在每个设置中利用一天对二元 QoL 结果的影响。我们还比较了综合加权和非加权的“不在家天数”变量。使用了两个时间段,6 个月和 18 个月,来预测三个照顾者 QoL 指标(自评健康、抑郁症状和主观负担)。

结果:在 6 个月的时间范围内,ED 利用一天与所有三个评估结果的 QoL 较差的可能性增加有关(范围:1.4%-3.2%)。PAC 利用一天与照顾者负担增加的中度相关(0.2%)和抑郁症状(0.1%),对自评健康有轻微的保护作用(-0.1%)。IP 利用一天对(-0.2 至-0.1%)有轻微的保护作用。在 18 个月时,ED 和 IP 与照顾者负担和抑郁症状有类似的关系,尽管影响较为缓和。PAC 对照顾者负担有轻微的保护作用(-0.1%)。所有设置中累计的护理者离家时间通常与照顾者 QoL 无关。

结论:尽管患者离开家的总时间对家庭照顾者有一些负面影响,但不同设置对照顾者 QoL 的相反影响可能掩盖了 QoL 的净效应。这一发现限制了将单一患者在家时间测量作为有效的以照顾者为中心的测量方法的效用。单独考虑个别设置中累计的护理者时间可能需要揭示对照顾者 QoL 的真实净影响。

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本文引用的文献

[1]
A stepped wedge cluster randomized trial to evaluate the effectiveness of a multisite family caregiver skills training program.

Health Serv Res. 2024-12

[2]
Trajectories of care and outcomes of Veterans receiving home-based primary care.

J Am Geriatr Soc. 2024-1

[3]
Informing a home time measure reflective of quality of life: A data driven investigation of time frames and settings of health care utilization.

Health Serv Res. 2023-12

[4]
Identifying Family and Unpaid Caregivers in Electronic Health Records: Descriptive Analysis.

JMIR Form Res. 2022-7-18

[5]
Perspectives on Home Time and Its Association With Quality of Life After Inpatient Surgery Among US Veterans.

JAMA Netw Open. 2022-1-4

[6]
Developing a person-centered, population based measure of "home time": Perspectives of older patients and unpaid caregivers.

Healthc (Amst). 2021-12

[7]
Assessing the concurrent validity of days alive and at home metric.

J Am Geriatr Soc. 2022-9

[8]
Caregiver Quality of Life: How to Measure It and Why.

Am J Health Promot. 2021-9

[9]
Estimating the minimum important difference in the DEMQOL instrument in people with dementia.

Qual Life Res. 2021-10

[10]
Advancing the science of population-based measures of home-time.

Healthc (Amst). 2020-12

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