Comprehensive care of amyotrophic lateral sclerosis patients: a care model

Abstract

Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease that presents with muscle weakness, causing progressive difficulty in movement, communication, eating and ultimately, breathing, creating a growing dependence on family members and other carers. The ideal way to address the problems associated with the disease, and the decisions that must be taken, is through multidisciplinary teams. The key objectives of these teams are to optimise medical care, facilitate communication between team members, and thus to improve the quality of care. In our centre, we have extensive experience in the care of patients with ALS through an interdisciplinary team whose aim is to ensure proper patient care from the hospital to the home setting. In this article, we describe the components of the team, their roles and our way of working.

Keywords: Amyotrophic lateral sclerosis; Care model; Equipo de enfermería domiciliaria; Equipo interdisciplinar; Esclerosis lateral amiotrófica; Gastrostomía percutánea; Home mechanical ventilation; Home nursing team; In-Exufflator; In-Exuflator; Interdisciplinary team; Modelo de atención; Percutaneous gastrostomy; Tracheostomy; Traqueostomía; Ventilación mecánica domiciliaria.