Evolución de pacientes con ELA bajo seguimiento neumológico y comparación de dos áreas asistenciales en una provincia española / Evolution under respiratory follow-up of patients with ALS and comparison of two healthcare areas in a Spanish province

Introducción: Describir las características de pacientes con Esclerosis Lateral Amiotrófica (ELA) remitidos para valoración respiratoria, determinando si existen factores diferenciales en el manejo clínico y su evolución en dos áreas asistenciales. Métodos: Análisis retrospectivo (seguimiento de 16 años) de pacientes con ELA atendidos en dos Servicios de Neumología en la misma provincia. Se analizan características demográficas, tipo de ELA, clase de adaptación a la ventilación domiciliaria (VMD), modalidad ventilatoria, uso de asistencia mecánica para la tos e indicación de gastrostomía, comparando supervivencia. El Área Sanitaria de Talavera de la Reina cuenta con acreditación de Unidad de Ventilación Domiciliaria Especializada, siendo de Unidad Básica en el Área de Toledo. Resultados: Se analizaron 97 pacientes (60 en Toledo). La edad media fue de 63,3 años y el 60,8% varones. Inicio espinal en el 55,7% y bulbar 35,1%. Se inició VMD en el 88% de los pacientes, siendo programada en el 80%. Indicación de tos asistida mecánica en un 35,1% y en el 51,5% de los pacientes se realizó gastrostomía. La supervivencia media global fue de 32,3 meses, desde el inicio de la VMD de 26,2 meses y 17,1 meses desde la realización de gastrostomía. Los datos de supervivencia fueron similares comparando ambas áreas asistenciales. Conclusiones: Los pacientes con ELA atendidos en dos áreas asistenciales, con criterios clínicos similares, pero con estrategias diferenciadas según los recursos disponibles, presentaron una supervivencia global similar, así como tras el inicio de la VMD y la realización de gastrostomía y con un resultado equiparable al de centros de referencia.(AU)

Background: We aim to describe the characteristics of patients with Amyotrophic Lateral Sclerosis (ALS) referred for respiratory assessment, and whether there are differential factors in the evolution of patients according to two different healthcare areas. Methods: Retrospective analysis of patients with ALS in two Pulmonology services at the same province in Spain (16-year follow-up). We analysed demographic variables, ALS subtype, Home Mechanical Ventilation (HMV) modality and way of adaptation, use of mechanical assisted cough and gastrostomy indication, comparing survival. In the Health Area of Talavera there is a Specialized Unit of HMV according to accreditation by Spanish Respiratory Society, with a Basic Unit in the Toledo Area. Results: A total of 97 patients were analysed (60 in Toledo). The mean age was 63,3 years and 60,8% were male. The form of onset was spinal: 55,7% and bulbar: 35,1%. HMV was started in 88% of the patients, programmed in 80% of them. The use of mechanical assisted cough reached 35,1% of the patients and up to 51,5% of them underwent gastrostomy. Median survival was 32,3 months, being 26,2 months from the start of HMV and 17,1 months after gastrostomy. When comparing the two areas survival data were similar. Conclusions: Patients with ALS assisted in two healthcare areas at the same province, with similar clinical criteria, but with differentiated strategies according to the available resources, present a similar overall survival, as well as after the start of HMV and the performance of gastrostomy and with a similar outcome compared with reference units.(AU)

Continuous home oxygen therapy.

Oxygen therapy is defined as the therapeutic use of oxygen and consists of administering oxygen at higher concentrations than those found in room air, with the aim of treating or preventing hypoxia. This therapeutic intervention has been shown to increase survival in patients with chronic obstructive pulmonary disease (COPD) and respiratory failure. Although this concept has been extended by analogy to chronic respiratory failure caused by respiratory and non-respiratory diseases, continuous oxygen therapy has not been shown to be effective in other disorders. Oxygen therapy has not been shown to improve survival in patients with COPD and moderate hypoxaemia, nor is there consensus regarding its use during nocturnal desaturations in COPD or desaturations caused by effort. The choice of the oxygen source must be made on the basis of criteria such as technical issues, patient comfort and adaptability and cost. Flow must be adjusted to achieve appropriate transcutaneous oxyhaemoglobin saturation correction.