Background

Facing the relentless worsening of their condition, ALS patients are required to make decisions on treatments and end-of-life care. A cognitive impairment showed to be a negative prognostic factor in ALS patients, perhaps affecting the ability to make informed decisions. Notwithstanding its crucial role, the capacity to consent to treatment (CCT) has never been evaluated in these patients.

Objectives

To assess the CCT in an ALS cohort in comparison to a control group, and to study the effects of demographic and clinical variables on this high-level cognitive function.

Methods

102 ALS patients and 106 healthy controls (HC) were enrolled. CCT was assessed using the MacArthur Competence Assessment Tool for Treatment (MAC-CAT-T) and the performance was classified into the three CCT outcomes (full credit, partial credit, no credit). Cognitive and psychological variables were assessed by MMSE, phonemic fluencies, Frontal System Behavioural Scale (FrSBe), and ALS Depression Inventory (ADI). Clinical and demographic variables were analyzed as possible predictors of the MAC-CAT-T outcomes. After a 1-year follow-up, CCT and neuropsychological assessments were repeated.

Results

Most ALS patients (i.e., from 75 to 83% according to the different sub-items) retain full CCT. However, a subpopulation of the ALS patients showed a reduced CCT with respect to the HC. Age, education, phonemic fluency, and depression appeared related to the CCT outcomes. After 1 year, only the reasoning items worsened.

Conclusions

This is a preliminary report suggesting that the large majority of ALS patients can retain full ability to choose between treatment options. However, demographic and neuropsychological variables may affect CCT, pointing to the need for special attention to the consent disclosure in this disease.

中文翻译：

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同意治疗肌萎缩性侧索硬化症的能力：初步报告。

背景

面对病情不断恶化，要求ALS患者就治疗和临终护理做出决定。认知障碍被证明是ALS患者的不良预后因素，可能影响做出明智决定的能力。尽管起着至关重要的作用，但从未在这些患者中评估同意治疗的能力（CCT）。

目标

与对照组相比，评估ALS队列中的CCT，并研究人口统计学和临床​​变量对这种高水平认知功能的影响。

方法

研究入组102例ALS患者和106例健康对照者（HC）。使用MacArthur治疗能力评估工具（MAC-CAT-T）对CCT进行了评估，并将绩效分为三项CCT结果（完全信用，部分信用，无信用）。认知和心理变量通过MMSE，音素流畅度，额叶系统行为量表（FrSBe）和ALS抑郁量表（ADI）进行评估。临床和人口统计学变量作为MAC-CAT-T结果的可能预测因素进行了分析。随访1年后，重复进行CCT和神经心理学评估。

结果

大多数ALS患者（根据不同的子项目，从75％到83％）保留完整的CCT。但是，相对于HC，一部分ALS患者显示出降低的CCT。年龄，学历，音素流利程度和抑郁似乎与CCT结果有关。1年后，仅推理项目恶化。

结论

这是一份初步报告，表明大多数ALS患者可以保留在治疗方案之间进行选择的全部能力。但是，人口统计学和神经心理学变量可能会影响CCT，这表明需要特别注意该疾病的知情同意书。