Abstract
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.
Highlights
Amyotrophic lateral sclerosis (ALS) is a neurological disorder characterized by a progressive impairment of motoneuron function due to degeneration of upper and lower motor neurons [1]
Respiratory failure is the most common cause of death for individuals with ALS, but the lives of most of these patients can be significantly prolonged by support [6,7].The introduction of mechanical ventilation increased the burden of care for patients with neuromuscular diseases [7,8,9]
Our study shows that the burden of care for severe respiratory ALS patients is extremely onerous, with a significant impact for the caregiver
Summary
The improvement of medical care techniques is increasing the number of end-stage respiratory patients dependent on the continuous administration of mechanical ventilation and mechanical cough assistor. This situation is contrasted with a modified social and family organization which is not always ready and prepared to sustain this burden of care [1,2]. The increasing need for care and surveillance of these patients is well known [2,3,4,5] This has prompted numerous studies which have evaluated either the psychosocial condition of the caregivers [2,3,4] or the quality of care seen from the perspective of the patient [5,6]
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