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疾病进展而非身体状况本身决定 ALS 患者的心理健康。

Disease progression but not physical state per se determines mental wellbeing in ALS.

机构信息

Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.

出版信息

J Neurol. 2020 Dec;267(12):3593-3601. doi: 10.1007/s00415-020-10027-x. Epub 2020 Jul 8.

DOI:10.1007/s00415-020-10027-x
PMID:32638110
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7674363/
Abstract

BACKGROUND

Studies provide inconclusive results on the question whether loss of mental wellbeing is actually associated with decline in physical function in amyotrophic lateral sclerosis (ALS). The purpose of this study was to determine predictors of mental wellbeing in ALS.

METHODS

In total, n = 330 ALS patients were interviewed on parameters of mental wellbeing to evaluate the patients' capacity of psychosocial adaptation. These parameters were global and subjective quality of life (QoL), and depressiveness. A subsample of n = 82 ALS patients were interviewed again within approximately a year (mean 14.34 ± 5.53 months).

RESULTS

Both global and subjective QoL were stable, whereas depressiveness increased within the course of 1 year after diagnosis. Physical function decline was associated with mental wellbeing. Progression of physical disabilities and symptom duration were significant predictors of wellbeing in the sense that fast progression and short time since symptom onset (both indicating short time to adapt) were associated with low wellbeing.

CONCLUSIONS

There is evidence for subsamples in ALS with regard to mental wellbeing, which are mainly determined by clinical parameters. Those subjects being reported in the literature to present with high mental wellbeing are often long survivors. High progression rate and low physical function when attending the clinic for the first time should be red flags and need special attention in clinical counseling.

摘要

背景

关于心理幸福感的丧失是否与肌萎缩侧索硬化症(ALS)患者的身体功能下降有关,目前的研究结果尚无定论。本研究旨在确定 ALS 患者心理幸福感的预测因素。

方法

共对 330 名 ALS 患者进行了心理幸福感相关参数的访谈,以评估患者的心理社会适应能力。这些参数包括整体和主观生活质量(QoL)以及抑郁程度。ALS 患者亚组的 n = 82 名患者在大约一年后(平均 14.34 ± 5.53 个月)再次接受访谈。

结果

整体和主观 QoL 均保持稳定,而抑郁程度在诊断后 1 年内增加。身体功能的下降与心理幸福感有关。身体残疾的进展和症状持续时间是幸福感的显著预测因素,因为快速进展和症状出现后时间短(均表明适应时间短)与低幸福感相关。

结论

ALS 患者在心理幸福感方面存在亚组证据,主要由临床参数决定。文献中报道的那些心理幸福感较高的患者往往是长期幸存者。初次就诊时的高进展率和低身体功能应视为危险信号,在临床咨询中需要特别注意。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7b2d/7674363/f878fbdc0261/415_2020_10027_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7b2d/7674363/f878fbdc0261/415_2020_10027_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7b2d/7674363/f878fbdc0261/415_2020_10027_Fig1_HTML.jpg

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