Aspectos sociais e econômicos na qualidade de vida de pacientes com esclerose lateral amiotrófica recebendo ventilação mecânica por período prolongado

Abstract

Patients with Amiotrophic Lateral Sclerosis often die from respiratory failure due to weakness of respiratory muscle, leading to hypoventilation and difficulty to clear secretions by worsening of the effectiveness of cough, and aspiration risk due to loss of coordination of the muscles involved in swallowing. From a certain momen, it becomes necessary the usage of mechanical ventilation to increase survival, and improve quality of life of these patients. The aim of this study was to review social and economics issues related to ALS patients receiving mechanical ventilation for a prolonged period, analyzing the financial and emotional burdens of the patient and those close to him. It was found that the level of information provided by doctors to patients and families about the disease, and the treatments available, has been insufficient, often causing patients to be ventilated by tracheostomy and regret later. Noninvasive ventilation (NIV) ensures a good quality of life, and patients who have greater knowledge of their condition usually opt for this mode of ventilation. It appears that patients treated at home by their families have higher satisfaction than those treated in institutions. The tracheostomized patients require greater social and economics burdens to the family than those NIV users. The presence of caregiver can be very helpful for the families ,both in terms of social and economical aspects, as hiring a certified nurse has higher costs. Sometimes their own families learn to perform procedures to save costs.