title: Quality of life in amyotrophic lateral sclerosis patients and caregivers: Impact of assistive communication from early stages.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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: Translational Clinical Physiology Unit, Instituto de Medicina Molecular, Avenida Professor Egas Moniz, University of Lisbon, 1649-028, Lisbon, Portugal.
authors: Ana
authors: A
authors: Londral
authors: Department of Medical Rehabilitation, Hospital de Santa Maria-Centro Hospitalar Lisboa Norte (CHLN), Lisbon, Portugal.
authors: Anabela
authors: A
authors: Pinto
authors: Translational Clinical Physiology Unit, Instituto de Medicina Molecular, Avenida Professor Egas Moniz, University of Lisbon, 1649-028, Lisbon, Portugal.
authors: Susana
authors: S
authors: Pinto
authors: Center of Acquisition and Signal Processing, Instituto Superior Técnico, University of Lisbon, Lisbon, Portugal.
authors: Luis
authors: L
authors: Azevedo
authors: Department of Neurosciences, Hospital de Santa Maria-CHLN, Lisbon, Portugal.
authors: Mamede
authors: M
authors: De Carvalho
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology* / Q000628:therapy*; D017028:Caregivers / Q000523:psychology*; D003143:Communication Devices for People with Disabilities; D004185:Disability Evaluation; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D010147:Pain Measurement; D011788:Quality of Life / Q000523:psychology*; D012656:Self-Help Devices; D011795:Surveys and Questionnaires
keywords: amyotrophic lateral sclerosis; assistive device; augmented and alternative communication; caregiver; quality of life