title: 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.
authors.affiliation: <org>Departamento de Neumología</org>, <addL>Hospital de la Santa Creu i Sant Pau</addL>, Barcelona, España. Electronic address: mguellr@santpau.cat.
authors.forename: Maria Rosa
authors.initials: MR
authors.lastname: Güell
authors.forename: Antonio
authors.initials: A
authors.lastname: Antón
authors.forename: Ricardo
authors.initials: R
authors.lastname: Rojas-García
authors.forename: Carmen
authors.initials: C
authors.lastname: Puy
authors.forename: Jesus
authors.initials: J
authors.lastname: Pradas
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000150:complications / Q000451:nursing / Q000523:psychology / Q000628:therapy*; D003191:Comprehensive Health Care / Q000458:organization & administration*; D003680:Deglutition Disorders / Q000209:etiology / Q000628:therapy; D004046:Dietetics; D006699:Home Care Services; D006757:Hospital Units / Q000458:organization & administration; D006801:Humans; D033183:Interdisciplinary Communication; D008511:Medicine; D008962:Models, Theoretical; D009069:Movement Disorders / Q000209:etiology / Q000628:therapy; D010044:Outpatient Clinics, Hospital / Q000458:organization & administration*; D010348:Patient Care Team; D010353:Patient Education as Topic; D011788:Quality of Life; D012120:Respiration Disorders / Q000209:etiology / Q000628:therapy; D012947:Social Work; D013030:Spain; D013064:Speech Disorders / Q000209:etiology / Q000628:therapy; D013070:Speech Therapy
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