Demirbas Murat, Hahn-Pedersen Julie H, Jørgensen Henrik L
Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
Novo Nordisk A/S, Søborg, Denmark.
Neurol Ther. 2023 Aug;12(4):1051-1068. doi: 10.1007/s40120-023-00493-6. Epub 2023 May 24.
Caregiving in Alzheimer's disease (AD) is often provided by informal care partners, who spend more hours per week on average than care partners of individuals with conditions other than AD. However, the burden of care in partners of individuals with AD has not been systematically compared to that of other chronic diseases.
The current study therefore aims to compare the care partner burden of AD to that of other chronic diseases through a systematic literature review.
Data was collected from journal articles published in the last 10 years, using two unique search strings in PubMed and analysed using pre-defined patient-reported outcome measures (PROMs) including the EQ-5D-5L, GAD-7, GHQ-12, PHQ-9, WPAI and the ZBI. The data was grouped according to the included PROMs and the diseases studied. The number of participants in the studies reporting burden of caregiving in AD was adjusted to reflect the number of participants in studies reporting care partner burden in other chronic diseases.
All results in this study are reported as a mean value and standard deviation (SD). The ZBI measurement was the most frequently used PROM to collect care partner burden (15 studies) and showed a moderate burden (mean 36.80, SD 18.35) on care partners of individuals with AD, higher than most of the other included diseases except for those characterized by psychiatric symptoms (mean scores 55.92 and 59.11). Other PROMs such as PHQ-9 (six studies) and GHQ-12 (four studies) showed a greater burden on care partners of individuals with other chronic diseases such as heart failure, haematopoietic cell transplantations, cancer and depression compared to AD. Likewise, GAD-7 and EQ-5D-5L measurements showed a lesser burden on care partners of individuals with AD compared to care partners of individuals with anxiety, cancer, asthma and chronic obstructive pulmonary disease. The current study suggests that care partners of individuals with AD experience a moderate burden, but with some variations depending on the PROMs used.
The results of this study were mixed with some PROMs indicating a greater burden for care partners of individuals with AD versus other chronic diseases, and other PROMs showing a greater burden for care partners of individuals with other chronic diseases. Psychiatric disorders imposed a greater burden on care partners compared to AD, while somatic diseases in the musculoskeletal system resulted in a significantly smaller burden on care partners compared to AD.
阿尔茨海默病（AD）的照护工作通常由非正式照护伙伴提供，他们平均每周花费的时间比患有AD以外疾病的个体的照护伙伴更多。然而，AD患者伴侣的照护负担尚未与其他慢性疾病的照护负担进行系统比较。
因此，本研究旨在通过系统的文献综述，比较AD患者照护伙伴的负担与其他慢性疾病患者照护伙伴的负担。
从过去10年发表的期刊文章中收集数据，在PubMed中使用两个独特的检索词，并使用预先定义的患者报告结局指标（PROMs）进行分析，包括EQ-5D-5L、GAD-7、GHQ-12、PHQ-9、WPAI和ZBI。数据根据纳入的PROMs和所研究的疾病进行分组。对报告AD照护负担的研究中的参与者数量进行调整，以反映报告其他慢性疾病照护伙伴负担的研究中的参与者数量。
本研究中的所有结果均以平均值和标准差（SD）报告。ZBI测量是最常用于收集照护伙伴负担的PROM（15项研究），显示AD患者的照护伙伴负担为中度（平均值36.80，标准差18.35），高于大多数其他纳入疾病，但以精神症状为特征的疾病除外（平均得分55.92和59.11）。与AD相比，其他PROM，如PHQ-9（6项研究）和GHQ-12（4项研究）显示，心力衰竭、造血细胞移植、癌症和抑郁症等其他慢性疾病患者的照护伙伴负担更大。同样，与焦虑症、癌症、哮喘和慢性阻塞性肺疾病患者的照护伙伴相比，GAD-7和EQ-5D-5L测量显示AD患者的照护伙伴负担较小。本研究表明，AD患者的照护伙伴负担为中度，但根据所使用的PROMs会有所不同。
本研究结果不一，一些PROMs表明AD患者的照护伙伴负担比其他慢性疾病患者的照护伙伴负担更大，而其他PROMs则显示其他慢性疾病患者的照护伙伴负担更大。与AD相比，精神障碍给照护伙伴带来的负担更大，而肌肉骨骼系统的躯体疾病给照护伙伴带来的负担明显小于AD。
