Empowering ALS Care: Multidisciplinary Management and Guideline Adherence at a Tertiary Hospital

Peclorio AS and Vineila AL

Published on: 2023-10-26

Abstract

Background: The management of Amyotrophic Lateral Sclerosis (ALS) benefits from a multidisciplinary approach, in line with European guidelines. This study conducted at our neuromuscular clinic explores the practical implications of guideline adherence in our clinical practice.

Methods: A retrospective analysis was conducted, involving 47 ALS patients (36 males, 11 females, and aged 40-81 years). Key areas of investigation included diagnosis, onset-to-diagnosis interval, and the presence of respiratory/sleep-related symptoms at presentation. Multidisciplinary care, neuroprotective and symptomatic treatments, genetic testing, respiratory care, communication needs, enteral nutrition, and palliative and end-of-life care were examined.

Results: Notable findings include a significant delay in ALS diagnosis, often accompanied by the presence of respiratory/sleep-related symptoms at presentation. Multidisciplinary care played a central role in our clinic's approach, with regular team meetings. All patients received Riluzole treatment, complemented by tailored symptom management. Genetic testing and counselling were offered to eligible candidates. Respiratory care encompassed non-invasive ventilation (83% usage), tracheostomy (8.5%), and mechanical cough support (60%). Communication needs were addressed with alternative methods and speech augmentation techniques. Percutaneous endoscopic gastrostomy was employed for enteral nutrition in 20 patients. Palliative care assessments were available when needed, though advanced life directives were underutilized.

Conclusion: This study underscores the essential role of a multidisciplinary approach as recommended by European guidelines in managing ALS. It emphasizes the significance of timely diagnosis, the importance of respiratory care, and the role of Riluzole in ALS management. These findings contribute to a deeper understanding of ALS care and the potential for enhancing patient outcomes.