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)

Relación del buen control oximétrico mantenido con la situación clínica, gasométrica y el pronóstico de los pacientes con ventilación mecánica no invasiva domiciliaria / Beneficial effect of nocturnal oximetric control on the clinical and gasometric situation and the prognosis of patients with home non-invasive mechanical ventilation

Introducción y objetivo: La eficacia de la ventilación mecánica no invasiva (VMNI) domiciliaria se evalúa mediante la determinación de los valores gasométricos sanguíneos en vigilia, la evolución de la sintomatología, y la monitorización de la ventilación durante la noche. Nuestro objetivo es evaluar si alcanzar unos valores definidos mediante la oximetría nocturna en la monitorización ambulatoria de la ventilación mecánica no invasiva (VMNI) se relaciona con la evolución clínica, gasométrica y la supervivencia de una muestra de pacientes con VMNI domiciliaria. Material y métodos: Estudio observacional de cohortes retrospectivo de una serie de pacientes en tratamiento con VMNI domiciliaria por diferentes causas. Se excluyeron los pacientes con esclerosis lateral amiotrófica y/o menos de 3 meses de seguimiento. Se valora la evolución de la sintomatología, la gasometría arterial basal en vigilia, y los registros oximétricos nocturnos domiciliarios, en cada visita ambulatoria. Se definió buen control oximétrico mantenido (COM) cuando se alcanzan unos valores y se mantienen hasta la última revisión. Se consideraron 2 grupos de pacientes, según alcanzaron o no un buen COM durante el seguimiento. Resultados: se evaluaron 400 pacientes, fueron incluidos finalmente 364 (91%), con una edad mediana de 68 años, el 51% varones. El 37,6% presentaban buen COM a lo largo del seguimiento. Comparando los pacientes con vs. sin buen COM, se obtuvo una menor mortalidad a largo plazo (16,8 vs. 28,2%; p=0,013), mejoría en la sintomatología (33,8 vs. 18,6%; p=0,002), y una menor proporción de pacientes con una PaCO2 persistentemente>50mmHg (14,2 vs. 33,9%; p<0,001). Conclusión: En el seguimiento de pacientes con VMNI domiciliaria en nuestro medio, unos valores definidos en la oximetría nocturna domiciliaria (buen COM) se asocia de forma positiva con una mejoría clínica, gasométrica y una mayor supervivencia a largo plazo

Introduction and objective: The effectiveness of home non-invasive mechanical ventilation (NIMV) is assessed by determining blood gas values in wakefulness, the evolution of their symptoms, and the monitoring of ventilation at night. The aim of our study is to evaluate whether defined values reached with outpatient monitoring by oximetry is related to the clinical, arterial gases and survival of a sample of patients with home NIMV. Material and method: Retrospective observational cohort study of a series of patients receiving home NIMV treatment for different causes. Patients with amyotrophic lateral sclerosis and less than 3 months of follow-up were excluded. The evolution of the patient's symptoms, their baseline arterial blood gases in wakefulness, and home nocturnal oximetry records, are evaluated at each outpatient visit. Good maintained oximetry control (MOC) was defined when mean O2 saturation values were reached and maintained until the last revision. Patient groups were considered, according to whether or not a good MOC was achieved during follow-up. Result: Four hundred patients were evaluated. Three hundred and sixty four (91%) were included in the study; their median age was 68 years, 51% were male. 37.6% had a good MOC during follow-up. Compared to patients with not good MOC, a better long-term mortality was obtained (16.8% vs 28.2%, P=.013), and an improvement in symptoms (33.8% vs 18.6%, P=.002) and a lower proportion of patients with persistently>50mmHg PaCO2 (14.2% vs. 33.9%, P<.001) was observed. Conclusion: In the follow-up of patients with home NIMV in our context, values defined in home nocturnal oximetry (good MOC) are positively associated with clinical, gasometric and longer-term survival

Beneficial effect of nocturnal oximetric control on the clinical and gasometric situation and the prognosis of patients with home non-invasive mechanical ventilation. / Relación del buen control oximétrico mantenido con la situación clínica, gasométrica y el pronóstico de los pacientes con ventilación mecánica no invasiva domiciliaria.

INTRODUCTION AND OBJECTIVE: The effectiveness of home non-invasive mechanical ventilation (NIMV) is assessed by determining blood gas values in wakefulness, the evolution of their symptoms, and the monitoring of ventilation at night. The aim of our study is to evaluate whether defined values reached with outpatient monitoring by oximetry is related to the clinical, arterial gases and survival of a sample of patients with home NIMV. MATERIAL AND METHOD: Retrospective observational cohort study of a series of patients receiving home NIMV treatment for different causes. Patients with amyotrophic lateral sclerosis and less than 3 months of follow-up were excluded. The evolution of the patient's symptoms, their baseline arterial blood gases in wakefulness, and home nocturnal oximetry records, are evaluated at each outpatient visit. Good maintained oximetry control (MOC) was defined when mean O2 saturation values were reached and maintained until the last revision. Patient groups were considered, according to whether or not a good MOC was achieved during follow-up. RESULT: Four hundred patients were evaluated. Three hundred and sixty four (91%) were included in the study; their median age was 68 years, 51% were male. 37.6% had a good MOC during follow-up. Compared to patients with not good MOC, a better long-term mortality was obtained (16.8% vs 28.2%, P=.013), and an improvement in symptoms (33.8% vs 18.6%, P=.002) and a lower proportion of patients with persistently>50mmHg PaCO2 (14.2% vs. 33.9%, P<.001) was observed. CONCLUSION: In the follow-up of patients with home NIMV in our context, values defined in home nocturnal oximetry (good MOC) are positively associated with clinical, gasometric and longer-term survival.