Quality of life in amyotrophic lateral sclerosis patients and caregivers: Impact of assistive communication from early stages. Issue 6 (30th June 2015)

• Record Type: Journal Article
• Authors: Londral, Ana; Pinto, Anabela; Pinto, Susana; Azevedo, Luis; De Carvalho, Mamede
• Is Part Of: Muscle & nerve. Volume 52:Issue 6(2015:Dec.)
• Page Start: 933
• Page End: 941
• Publication Date: 2015-06-30
• Subjects: amyotrophic lateral sclerosis -- augmented and alternative communication -- assistive device -- caregiver -- quality of life; Neuromuscular diseases -- Periodicals; Muscles -- Periodicals; Nerves -- Periodicals; 616.74
• DOI: 10.1002/mus.24659
• Languages: English
• ISSNs: 0148-639X

Abstract

ABSTRACT: Introduction : In this study we performed a longitudinal investigation to assess the impact of early introduction of assistive communication devices (ACDs) on quality of life (QoL) in amyotrophic lateral sclerosis (ALS) patients and their caregivers. Methods : Patients were followed for 7–10 months (3 evaluation periods). Bulbar‐onset ALS patients ( N = 27) and paired caregivers ( N = 17) were included. Fifteen randomly selected patients received early support in ACD use. Patients were assessed using the ALS Functional Rating Scale—revised (ALSFRS‐R), the McGill QoL (MQoL), the Communication Effectiveness Index (CETI), and performance in writing; and caregivers were assessed with the MQoL and World Health Organization Quality of Life questionnaire (WHOQOL‐BREF). Results : Patients with early support had higher MQoL Psychological and MQoL Existential well‐being domains; caregivers had higher MQoL Support domain and their MQoL Psychological domain positively associated with patient CETI. Most patients could communicate using a touchscreen keyboard to write, even when handwriting and speech were not possible. Conclusion : Early intervention with an ACD seems to have a positive impact on QoL and gives patients the opportunity to improve skills for communication in later disease stages. Muscle Nerve 52 : 933–941, 2015