Atención clínica, toma de decisiones y soporte nutricional en pacientes con esclerosis lateral amiotrófica

Laburpena

Background: In cases of ALS, due to the highly complex situations arising during the disease, it is essential to provide adequate information to the patient, so they can make suitable decisions concerning quality of life and symptom management over the course of their disease. To this end, an interdisciplinary and interlevel team has been created in the Hospital Universitario Puerta del Mar of Cádiz to provide the best care for people living with ALS. Objectives: Compare variables related to the clinical outcome and decisioin-making before and after the creation of the team. Methods: Descriptive and observational study. Variables under evaluation were compared pre- and post- intervention, including: symptoms at the admission or consultation stages, care taking episodes in the hospital, interdepartmental clinical issues, entries in the medical record of existence or prospect of completing the advance health care directive, decision-making and nutritional support. Result: For sake of comparison, two groups were formed, the first one was made of 15, whereas the second one composed of 13 patients. There was a significant improvement in all the variables under study. It is especially remarkable the advance in the living will records, decision-making and nutritional support. Discussion-Conclusion: The creation of an interdisciplinary team capable fo engaging the patient of ALS in the clinical issues and symptom management over the course of the disease, not only ensures an adequate decision-making by the patient, but improves the results of the corresponding clinical indicators