Swallowing-related quality of life in progressive supranuclear palsy.
Swallowing-related quality of life in progressive supranuclear palsy.
Where did the research take place?
The study site has not been established. Author addresses may differ from where the research occurred.
New York City, US · Author affiliation
Department of Biobehavioral Sciences, Teachers College Columbia University, New York, NY, USA.Location evidence
Houston, US · Author affiliation
Department of Neurology, Baylor College of Medicine, Houston, TX, USA.Location evidence
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Original abstract
AIMS: Dysphagia in Progressive Supranuclear Palsy (PSP) has devastating consequences, including pneumonia and death; however, no studies have described its impact on quality of life (QOL), limiting the degree to which management approaches align with patient needs. Therefore, in this cross-sectional retrospective analysis we characterized swallowing-related QOL (SWAL-QOL) in PSP and assessed its relationship with demographic and clinical characteristics. PATIENTS & METHODS: Consecutive outpatients completed an assessment of swallowing including the SWAL-QOL questionnaire. Correlations and Wilcoxon sum-rank tests were used to examine whether SWAL-QOL total score (primary analysis) and domain scores (exploratory analysis) differed by demographic variables (age, sex, disease duration), diet status, cognition (MoCA), and swallowing safety. RESULTS: Thirty-five patients with PSP were included (mean age 71, 14F). Median SWAL-QOL total score was 72.1 [IQR 52.6, 82.8]. The most impaired domains were eating duration, fatigue, and communication (M = 50). Those on modified diets had significantly lower total scores (M = 44.1) than those on regular diets (M = 79.8) (W = 22; p = .003). No relationship between total score and age (ρ = 0.30; p = .079), sex (W = 126; p = 0.495), disease duration (ρ = -0.161; p = .354), cognition (ρ=0.207; p = .273), or swallowing safety (χ2 = 1.89; p = .389) was found. CONCLUSIONS: SWAL-QOL is reduced in PSP and findings suggest that attention to eating duration and diet modification may inform person-centered care.