Abstract

Amyotrophic lateral sclerosis (ALS) is the most common degenerative motor neuron disease. There is no curative treatment available, and these patients require multidisciplinary support to promote their comfort and quality of life. Longitudinal descriptive study in patients registered in primary care (PC), Costa de Ponent-Barcelona Institut Catala de la Salut to analyse emergency hospital visits, use of support devices and their integration into the primary care chronicity program. Variables were sex, age and evolution time, emergency visits, patients with percutaneous gastrostomy (PEG), non-invasive or invasive ventilation (NIV/VI), integration in the primary care chronicity program. 81 patients, 49.4% male, mean age 65.6 years (±11.7), evolution time less than 2 years or equal to or greater than 2 years (42 and 58%, respectively). Of them, 47 (58.5%) made 107 consultations. The most frequent reasons for consultation were falls (26.8%), respiratory difficulties (23.3%), comorbidity (16.7%), eating problems (11%) and pain (10.2%) without differences by age or sex. Greater frequency (p < 0.001) was observed in patients with less than two years of evolution and significant increases in the use of NIV and PEG up to 51.9 and 35.8% respectively, as well as integration in primary care chronicity program of 61.7%. Accidental falls were the most frequent and potentially avoidable reason for hospital emergency visits in patients with ALS, especially in the first two years of the disease. Significant increases are detected in the use of support devices and in primary care chronicity program integration. It is necessary to increase home resources, especially in physiotherapy and occupational therapy.

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