Swallowing-related quality of life in progressive supranuclear palsy

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.