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. 2016 Jun;31(3):376-82.
doi: 10.1007/s00455-015-9686-2. Epub 2016 Feb 2.

Defining Swallowing-Related Quality of Life Profiles in Individuals with Amyotrophic Lateral Sclerosis

Lauren Tabor  1   2 , Joy Gaziano  3 , Stephanie Watts  3 , Raele Robison  4   5 , Emily K Plowman  4   5
Affiliations

Defining Swallowing-Related Quality of Life Profiles in Individuals with Amyotrophic Lateral Sclerosis

Lauren Tabor et al. Dysphagia. 2016 Jun.

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.

Keywords: Amyotrophic lateral sclerosis; Deglutition; Deglutition disorders; Dysphagia; Quality of life.

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Figures

Fig. 1
Fig. 1
Scatterplot depicting a positive correlation between swallowing-related quality of life (total SWAL-QOL score) and global disease progression (ALSFRS-R score), r = 0.23, p < 0.05
Fig. 2
Fig. 2
Scatterplot depicting a positive correlation between swallowing-related quality of life (total SWAL-QOL score) and degree of bulbar ALS disease involvement (bulbar sub-scores of the ALSFRS-R), r = 0.46, p < 0.001
Fig. 3
Fig. 3
Scatterplot depicting a negative correlation between swallowing-related quality of life (total SWAL-QOL score) and degree of airway invasion during swallowing (Penetration Aspiration scale score), r = −0.39, p < 0.001
See this image and copyright information in PMC

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