Open AccessMANAGEMENT OF THE PATIENT WITH ADVANCED AMYOTROPHIC LATERAL SCLEROSIS: THE CAREGIVER’S OPINION
Author(s) -
Maria Rivara,
Cornelius Barlascini,
Paolo Banfi,
Antonello Nicolini,
Bruna Grecchi
Publication year - 2016
Publication title -
romanian journal of neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.111
H-Index - 4
eISSN - 2069-6094
pISSN - 1843-8148
DOI - 10.37897/rjn.2016.1.3
Subject(s) - amyotrophic lateral sclerosis , medicine , quality of life (healthcare) , respiratory care , disease , mechanical ventilation , population , neuromuscular disease , multiple sclerosis , health care , physical therapy , stage (stratigraphy) , intensive care medicine , nursing , psychiatry , environmental health , paleontology , economics , biology , economic growth
Objectives. The possibility of prolonging and augmenting the quality of life of respiratory patients in end-stage disease and in particular neuromuscular disease patients depends on an increased level of care. Amyotrophic lateral sclerosis (ALS) is a neurological disease characterized by a fast progressive impairment of respiratory function which leads to mechanical ventilation and high burden of care. A specifically designed questionnaire was administered to caregivers to analyze the level of care provided to these patients in our districts. Patients and methods. The study population consisted of 70 patients (44 males and 26 females). Of the 70 patients, 46 were being treated with non-invasive ventilation and 24 with invasive mechanical ventilation. The questionnaire was divided in two parts: questions 1 to 13 investigated life conditions and 14 to 22 the quality of care provided. Results. The patients studied present a heavy burden of care and this is in relation to the quantity of respiratory aids prescribed. The symptom which created statistically significant problems for care was breathlessness, as is often reported in the literature. The presence of homecare tended to create conditions of greater serenity for the caregivers. Conclusions. This study shows that the burden of care in end-stage ALS patients is very onerous, and it can help to point out problems not sufficiently contemplated in healthcare planning.