Summary
Decalogue of best practices for the care of people with Amyotrophic Lateral Sclerosis in Emergency Depatments and Emergency Medical Services
F. Javier Martín-Sánchez1, Isabel M. García Sánchez1, María del Carmen Marcos Sastre1, Rosa Pérez Losa2, Laia Casas Llopart2, María Ángeles Semprun3, Raquel Estúñiga4, Carmen Martínez Sarmiento4
Affiliation of the authors
1Centro Especializado de Atención Diurna para la Esclerosis Lateral Amiotrófica del Hospital Enfermera Isabel Zendal, Madrid, Spain. 2Sociedad Española de Medicina de Urgencias y Emergencias, Spain. 3SUMMA 112, Madrid, Spain. 4Asociación Adela, Madrid, Spain.
DOI
Quote
Martín-Sánchez FJ, García Sánchez IM, Marcos Sastre MC, Pérez Losa R, Casas Llopart L, Semprun MA, Estúñiga R, Martínez Sarmiento C. Decalogue of best practices for the care of people with Amyotrophic Lateral Sclerosis in Emergency Depatments and Emergency Medical Services. Rev Esp Urg Emerg. 2026;5:295-8
Summary
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with low prevalence and high morbidity and mortality. There are care-related challenges arising from dysphagia, dysarthria/anarthria, dependence on life-support devices, and care planning. To improve the quality and safety of care in emergency and urgent care services in this context, the Spanish Society of Emergency Medicine and Emergency Care (SEMES) and the Spanish Association of Amyotrophic Lateral Sclerosis (adELA) developed, in 2024, through a literature review and multidisciplinary consensus involving health care professionals and patients, a decalogue of good practices addressing 10 priority areas: (1) ambulance transport in a semi-upright position together with the caregiver, (2) priority care during hospital triage, (3) adapted communication using augmentative systems, (4) caregiver accompaniment, (5) use of the patient’s own devices, (6) respiratory management with early indication of noninvasive ventilation, (7) GI and nutritional support with special attention to PEG tube management and aspiration prevention, (8) coordination with specific care units, (9) minimization of respiratory depressant drugs, and (10) respect for advance directives. This decalogue should be disseminated as a training tool in emergency and urgent care services and implemented through care programs for advanced neuromuscular diseases.