Augmentative and Alternative Communication Effects on Quality of Life in Patients with Locked-in Syndrome and Their Caregivers

Abstract

Background: The aim of this study was to evaluate the impact of the augmentative and alternative communication system on anxiety and depression performances and the quality of life (QoL) of patients who have the locked-in syndrome (LIS) and that of their caregivers.

Method: We enrolled 15 patients and their principal caregivers. The assessment consisted of the administration of the employed Short Form-36 Questionnaire for the assessment of QoL, the Hamilton Anxiety Rating Scale (HAM-A) for anxiety, and the Beck Depression Inventory for depression.

Results: We compared the clinical test at baseline (T0) and after 3 months (T1) for each group (patients and caregivers). In the patients group, we observed a significant difference in all clinical test scores. In the caregivers group, we observed a significant difference for HAM-A (P = .003), vitality (P < .001), social activity (P < .001), social role functioning (P < .001), and emotional role functioning (P < .001) and no significant differences for other clinical scores.

Conclusion: The possibility of being able to communicate allows patients with the LIS to recuperate a affective contact with their caregivers, improving global family atmosphere.

Keywords: Anxiety and depression; augmentative and alternative communication; locked-in syndrome; quality of life.