Abstract Details

Title The Voice of Silence - The Impact of Augmentative / Alternative Communication on the Quality of Life of Patients Diagnosed with Amyotrophic Lateral Sclerosis

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P1 - Poster Session 1 (12:00 PM-1:00 PM)

Poster/Presentation
Number 1-010

Objective The main objective of this study is to evaluate the impact of the use of low-tech alternative communication (AAC) on the quality of life of patients diagnosed with ALS. A new model of communication instrument specifically designed to optimize the use of the resource by the patient will be proposed. In addition, the optimal timing of feature introduction will be highlighted according to the level of patient communication functionality.

Background In a short time ALS brings important deprivations in the patient's life, being the inability to communicate orally one of the main. This is the greatest importance of speech therapy intervencion.

Design/Methods Data collection is being carried out by the interdisciplinary team of the Rehabilitation and Neurosciences at Sarah Hospital - Rio de Janeiro. This is a case series study of selected patients who meet diagnostic criteria for definitive or probable ALS according to the El Escorial revision (2008), and functionally classified according the ALSFRS-R scale.
Data will be correlated with the quality of life scale (ALSAQ-40). When the inability to communicate functionally is found, then training for the use of the “Optimized Alphabetical Chart” will begin.

Results The ALSFRS-R scale - 183 patients in 2019, and 39% had speech dysfunction. On the ALSAQ-40 scale, in 24 patients, a mood impact on 50% of speech impaired patients, compared to 38% with gait impairment. Of these, 10 used the Alphabetical Chart for a period with 90% satisfaction and good adherence.
Data collection is still in progress.

Conclusions In the case of a disease such as ALS, where the offered adaptations are not always able to keep pace with its progression, it is necessary to rethink what we have to offer as an AAC resource to enable the patient's communication enabling the reach of the patient autonomy over motor dependence, in search of a better quality of life.

Authors/Disclosures
PRESENTER	No disclosure on file