Symptoms timeline and outcomes in amyotrophic lateral sclerosis using artificial intelligence.

Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative motor neuron disease. Although an early diagnosis is crucial to provide adequate care and improve survival, patients with ALS experience a significant diagnostic delay. This study aimed to use real-world data to describe the clinical profile and timing between symptom onset, diagnosis, and relevant outcomes in ALS. Retrospective and multicenter study in 5 representative hospitals and Primary Care services in the SESCAM Healthcare Network (Castilla-La Mancha, Spain). Using Natural Language Processing (NLP), the clinical information in electronic health records of all patients with ALS was extracted between January 2014 and December 2018. From a source population of all individuals attended in the participating hospitals, 250 ALS patients were identified (61.6% male, mean age 64.7 years). Of these, 64% had spinal and 36% bulbar ALS. For most defining symptoms, including dyspnea, dysarthria, dysphagia and fasciculations, the overall diagnostic delay from symptom onset was 11 (6-18) months. Prior to diagnosis, only 38.8% of patients had visited the neurologist. In a median post-diagnosis follow-up of 25 months, 52% underwent gastrostomy, 64% non-invasive ventilation, 16.4% tracheostomy, and 87.6% riluzole treatment; these were more commonly reported (all Ps < 0.05) and showed greater probability of occurrence (all Ps < 0.03) in bulbar ALS. Our results highlight the diagnostic delay in ALS and revealed differences in the clinical characteristics and occurrence of major disease-specific events across ALS subtypes. NLP holds great promise for its application in the wider context of rare neurological diseases.

Perfusión de furosemida subcutánea como tratamiento paliativo en insuficiencia cardiaca refractaria / Subcutaneous furosemide infusion as palliative treatment in refractory end-stage heart failure

Resumen En la insuficiencia cardiaca terminal los síntomas predominantes habitualmente están relacionados con la congestión; sin embargo, la resistencia a diuréticos vía oral es frecuente y necesita tratamiento parenteral para paliar los síntomas. La administración intravenosa de furosemida requiere hospitalización o asistencia hospitalaria, lo que supone un deterioro significativo de la calidad de vida de pacientes en fases avanzadas de la enfermedad. La administración subcutánea continua de furosemida mediante infusor elastomérico es una técnica eficaz con baja tasa de complicaciones graves que permite la administración de diurético parenteral en el ámbito domiciliario, y evita la necesidad de hospitalizar. A pesar de que esta modalidad de tratamiento no está aceptada en ficha técnica y requiere más estudios que precisen su indicación, puede suponer un recurso adecuado para pacientes seleccionados. Se presenta el caso de una paciente con insuficiencia cardiaca avanzada, síntomas congestivos y ausencia de respuesta a tratamiento deplectivo vía oral, tratada con perfusión continua subcutánea domiciliaria de furosemida mediante infusor elastomérico de forma prolongada.

Abstract In end-stage heart failure the predominant symptoms are usually associated with congestion. However, the resistance to oral diuretics is common and requires parenteral treatment to alleviate the symptoms. The intravenous administration of furosemide requires hospital admission or hospital care. This leads to a significant decrease in the quality of life of patients in advance stages of the disease. The continuous subcutaneous infusion of furosemide using an elastomeric pump is an effective technique, with a low rate of serious complications that allows a parenteral diuretic to be administered in the home environment and thus avoiding the need for hospital admission. Despite this mode of treatment not being indicated in the drug data sheet, and requires more studies that specify its indication, it may be a suitable recourse for selected patients. It is presented a case of a patient with advanced heart failure, congestive symptoms, and a lack of response to oral diuretics treatment, and then treated with a continuous and prolonged subcutaneous infusion of furosemide at home using an elastomeric infusion pump.

Home Palliative Care for Patients with Advanced Chronic Kidney Disease: Preliminary Results.

Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m²). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital's emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams.

Programa de atención domiciliaria a pacientes con enfermedad renal crónica avanzada. Experiencia de dos años / Home care programme for patients with advanced chronic kidney disease. A two-year experience

Introducción: La atención sanitaria de los pacientes con enfermedad renal crónica avanzada (ERCA) bajo tratamiento conservador plantea con gran frecuencia problemas asistenciales de difícil solución. Muchos de ellos son enfermos añosos, con dificultad de movilidad, en los que los desplazamientos al centro hospitalario suponen una gran dificultad. A finales del año 2011 iniciamos un programa basado en la asistencia y el control de estos enfermos por los equipos de Atención Primaria. Material y métodos: A los pacientes con ERCA que han elegido tratamiento conservador, se les ofrece la posibilidad de recibir una asistencia fundamentalmente domiciliaria por el médico de Atención Primaria, bajo la coordinación de la Unidad de Cuidados Paliativos y del Servicio de Nefrología. Resultados: Durante los años 2012 y 2013, 50 enfermos recibieron tratamiento en este programa. Edad media: 81 años, índice edad-comorbilidad de Charlson: 10, y filtrado glomerular medio 11,8 ml/min/1,73 m². El tiempo de seguimiento medio por enfermo (hasta el fallecimiento o hasta el 31/12/2013) fue de 184 días. Durante este período, el 44 % de los enfermos no tuvo que acudir al Servicio de Urgencias del hospital, y el 58 % no precisó ingreso hospitalario. Fallecieron 29 de los 50 enfermos, tras un tiempo medio de permanencia en el programa de 163 días; en 14 de ellos (48 %), el sitio de fallecimiento fue su domicilio. Conclusiones: Nuestra experiencia indica que con soporte de la Unidad de Cuidados Paliativos y del Servicio de Nefrología, el paciente con ERCA no candidato a diálisis puede ser controlado en su domicilio por Atención Primaria (AU)

Introduction: Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. Many patients are elderly and have mobility problems, and it is very difficult for them to travel to hospital. At the end of 2011, we began a programme based on the care and monitoring of these patients by Primary Care teams. Material and method: ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor, under the coordination of the Palliative Care Unit and the Nephrology Department. Results: During 2012 and 2013, 50 patients received treatment in this programme. Mean age: 81 years, Charlson age-comorbidity index: 10 and mean glomerular filtration rate: 11.8ml/min/1.73.m². The mean patient follow-up time (until death or until 31/12/2013) was 184 days. During this period, 44% of patients did not have to visit the hospital’s Emergency Department and 58% did not require hospitalisation. 29 of the 50 patients died after a mean time of 163 days on the programme; 14 (48%) died at home. Conclusions: Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care (AU)

Home care programme for patients with advanced chronic kidney disease. A two-year experience.

INTRODUCTION:  Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. Many patients are elderly and have mobility problems, and it is very difficult for them to travel to hospital. At the end of 2011, we began a programme based on the care and monitoring of these patients by Primary Care teams.  MATERIAL AND METHOD:  ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor, under the coordination of the Palliative Care Unit and the Nephrology Department.  RESULTS:  During 2012 and 2013, 50 patients received treatment in this programme. Mean age: 81 years, Charlson age-comorbidity index: 10 and mean glomerular filtration rate: 11.8ml/min/1.73.m². The mean patient follow-up time (until death or until 31/12/2013) was 184 days. During this period, 44% of patients did not have to visit the hospital’s Emergency Department and 58% did not require hospitalisation. 29 of the 50 patients died after a mean time of 163 days on the programme; 14 (48%) died at home.  CONCLUSIONS:  Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care.