Ana Londral1, Anabela Pinto2, Susana Pinto1, Luis Azevedo3, Mamede De Carvalho4. 1. Translational Clinical Physiology Unit, Instituto de Medicina Molecular, Avenida Professor Egas Moniz, University of Lisbon, 1649-028, Lisbon, Portugal. 2. Department of Medical Rehabilitation, Hospital de Santa Maria-Centro Hospitalar Lisboa Norte (CHLN), Lisbon, Portugal. 3. Center of Acquisition and Signal Processing, Instituto Superior Técnico, University of Lisbon, Lisbon, Portugal. 4. Department of Neurosciences, Hospital de Santa Maria-CHLN, Lisbon, Portugal.
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.
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 ALSpatients (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.
Authors: Timothée Lenglet; Jonathan Mirault; Marie Veyrat-Masson; Aurélie Funkiewiez; Maria Del Mar Amador; Gaelle Bruneteau; Nadine Le Forestier; Pierre-Francois Pradat; Francois Salachas; Yannick Vacher; Lucette Lacomblez; Jean Lorenceau Journal: Front Neurosci Date: 2019-05-29 Impact factor: 4.677