Neuroscience Department, University of Turin, 10126, Turin, Italy.
Azienda Ospedaliero Universitaria Città Della Salute e Della Scienza di Torino, Neurology 1, Turin, Italy.
Neurol Sci. 2024 Dec;45(12):5787-5794. doi: 10.1007/s10072-024-07702-6. Epub 2024 Jul 29.
Amyotrophic Lateral Sclerosis (ALS) is a fatal motor neuron disease with a highly variable prognosis. Among the proposed prognostic models, the European Network for the cure of ALS (ENCALS) survival model has demonstrated good predictive performance. However, few studies have examined prognostic communication and the diffusion of prognostic algorithms in ALS care.
To investigate neurologists' attitudes toward prognostic communication and their knowledge and utilization of the ENCALS survival model in clinical practice.
A web-based survey was administered between May 2021 and March 2022 to the 40 Italian ALS Centers members of the Motor Neuron Disease Study Group of the Italian Society of Neurology.
Twenty-two out of 40 (55.0%) Italian ALS Centers responded to the survey, totaling 37 responses. The model was known by 27 (73.0%) respondents. However, it was predominantly utilized for research (81.1%) rather than for clinical prognostic communication (7.4%). Major obstacles to prognostic communication included the unpredictability of disease course, fear of a negative impact on patients or caregivers, dysfunctional reaction to diagnosis, and cognitive impairment. Nonetheless, the model was viewed as potentially useful for improving clinical management, increasing disease awareness, and facilitating care planning, especially end-of-life planning.
Despite the widespread recognition and positive perceptions of the ENCALS survival model among Italian neurologists with expertise in ALS, its implementation in clinical practice remains limited. Addressing this disparity may require systematic investigations and targeted training to integrate tailored prognostic communication into ALS care protocols, aligning with the growing availability of prognostic tools for ALS.
肌萎缩侧索硬化症（ALS）是一种致命的运动神经元疾病，预后高度可变。在提出的预后模型中，欧洲肌萎缩侧索硬化症治愈网络（ENCALS）生存模型已证明具有良好的预测性能。然而，很少有研究探讨预后沟通以及 ALS 护理中预后算法的传播。
调查神经科医生对预后沟通的态度，以及他们在临床实践中对 ENCALS 生存模型的了解和应用。
2021 年 5 月至 2022 年 3 月，采用网络问卷调查法对意大利神经病学学会运动神经元疾病研究组的 40 家意大利 ALS 中心的成员进行调查。
共有 40 家意大利 ALS 中心中的 22 家（55.0%）对调查做出了回应，共收到 37 份回复。27 名（73.0%）受访者知晓该模型。然而，该模型主要用于研究（81.1%），而非临床预后沟通（7.4%）。预后沟通的主要障碍包括疾病进程的不可预测性、担心对患者或照护者产生负面影响、对诊断的反应不良以及认知障碍。尽管如此，该模型被认为具有潜在的临床应用价值，能够改善临床管理、提高疾病意识，并有助于规划照护，尤其是临终规划。
尽管意大利 ALS 专家神经科医生广泛认可和看好 ENCALS 生存模型，但在临床实践中的应用仍然有限。为了解决这一差距，可能需要进行系统研究和针对性培训，将定制化的预后沟通纳入 ALS 照护方案中，以适应 ALS 预后工具的日益普及。
