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Disease progression but not physical state per se determines mental wellbeing in ALS.
Journal of Neurology ( IF 4.8 ) Pub Date : 2020-07-08 , DOI: 10.1007/s00415-020-10027-x
Cynthia R Vázquez Medrano 1 , Helena E A Aho-Özhan 1 , Ulrike Weiland 1 , Ingo Uttner 1 , Albert C Ludolph 1 , Dorothée Lulé 1
Affiliation  

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.



中文翻译:

疾病进展而不是身体状态本身决定了ALS的心理健康。

背景

关于精神健康的丧失是否实际上与肌萎缩性侧索硬化症(ALS)的身体机能下降有关的问题,研究提供了不确定的结果。这项研究的目的是确定ALS中心理健康的预测因素。

方法

总共,Ñ  = 330名ALS患者进行了采访上精神健康评估患者的心理社会适应的能力的参数。这些参数是整体和主观生活质量(QoL)和抑郁症。 在大约一年(平均14.34±5.53个月)内再次对n例82例ALS患者的子样本进行了采访。

结果

总体和主观QoL均稳定,而抑郁症在诊断后1年内增加。身体机能下降与心理健康有关。身体残疾的进展和症状的持续时间是幸福感的重要预测指标,因为症状发作后的快速进展和短时间(均表明适应时间短)与低幸福感相关。

结论

有证据表明ALS中有关心理健康的子样本主要由临床参数决定。文献中报道的那些心理健康状况高的受试者通常是长期幸存者。初次就诊时病情进展快,身体机能低下是危险信号,在临床咨询中应特别注意。

更新日期:2020-07-08
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