title: Defining Swallowing-Related Quality of Life Profiles in Individuals with Amyotrophic Lateral Sclerosis.
abstract: Although it is known that dysphagia contributes to significant malnutrition, pneumonia, and mortality in amyotrophic lateral sclerosis (ALS), it remains unclear how swallowing impairment impacts quality of life in this vulnerable patient population. The aim of the current study was to (1) delineate swallow-related quality of life (SR-QOL) profiles in individuals with ALS and (2) evaluate relationships between SR-QOL, degree of swallowing impairment, and ALS global disease progression. Eighty-one ALS patients underwent a standardized videofluoroscopic swallow study and completed the swallowing quality of life (SWAL-QOL) instrument and ALS functional rating scale-revised (ALSFRS-R). Penetration Aspiration Scale (PAS) scores were derived by a blinded rater. Correlation analyses and a between groups ANOVA (safe vs. penetrators vs. aspirators) were performed. Mean SWAL-QOL score for this cohort was 75.94 indicating a moderate degree of SR-QOL impairment with fatigue, eating duration, and communication representing the most affected domains. Correlations were revealed between the SWAL-QOL and (1) PAS (r = -0.39, p < 0.001) and (2) ALSFRS-R (r = 0.23, p < 0.05). Mean (SD) SWAL-QOL scores for safe versus penetrator versus aspirator groups were 81.2 (2.3) versus 77 (3.4) versus 58.7 (5.9), respectively, with a main effect observed [F(2,78) = 9.71, p < 0.001]. Post hoc testing revealed lower SWAL-QOL scores for aspirators versus safe swallowers (p < 0.001) and aspirators versus penetrators (p < 0.001). Overall, SR-QOL was moderately reduced in this cohort of ALS patients and profoundly impacted in ALS aspirators and individuals with advanced disease. These findings highlight the importance of early multidisciplinary intervention to not only avoid malnutrition, weight loss, and pulmonary sequelae but also the associated reduced QOL seen in these individuals.
authors.affiliation: Department of Speech, Language and Hearing Sciences, College of Public Health and Health Professions, University of Florida, 1225 Center Drive, P.O. Box 100185, Gainesville, FL, 32611, USA. ltabor@ufl.edu.|Neuromotor Speech and Swallowing Restoration Laboratory, University of Florida, Gainesville, USA. ltabor@ufl.edu.
authors.forename: Lauren
authors.initials: L
authors.lastname: Tabor
authors.affiliation: Joy McCann Center for Voice and Swallowing Disorders, University of South Florida, Tampa, USA.
authors.forename: Joy
authors.initials: J
authors.lastname: Gaziano
authors.affiliation: Joy McCann Center for Voice and Swallowing Disorders, University of South Florida, Tampa, USA.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Watts
authors.affiliation: Department of Speech, Language and Hearing Sciences, College of Public Health and Health Professions, University of Florida, 1225 Center Drive, P.O. Box 100185, Gainesville, FL, 32611, USA.|Neuromotor Speech and Swallowing Restoration Laboratory, University of Florida, Gainesville, USA.
authors.forename: Raele
authors.initials: R
authors.lastname: Robison
authors.affiliation: Department of Speech, Language and Hearing Sciences, College of Public Health and Health Professions, University of Florida, 1225 Center Drive, P.O. Box 100185, Gainesville, FL, 32611, USA.|Neuromotor Speech and Swallowing Restoration Laboratory, University of Florida, Gainesville, USA.
authors.forename: Emily K
authors.initials: EK
authors.lastname: Plowman
mesh_terms: D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications / Q000503:physiopathology*; D015331:Cohort Studies; D003679:Deglutition / Q000502:physiology; D003680:Deglutition Disorders / Q000209:etiology / Q000503:physiopathology*; D018450:Disease Progression; D005260:Female; D005471:Fluoroscopy / Q000379:methods; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D053120:Respiratory Aspiration / Q000209:etiology / Q000503:physiopathology; D012720:Severity of Illness Index
keywords: Amyotrophic lateral sclerosis; Deglutition; Deglutition disorders; Dysphagia; Quality of life
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