Dysphagia patient-reported outcome measures in multiple sclerosis
Dysphagia in multiple sclerosis (MS) is poorly characterized. The Dysphagia in Multiple Sclerosis (DYMUS) is a dysphagia questionnaire developed specifically for persons with MS but lacks validation, and recent research has questioned its accuracy as a screening tool. The Sydney Swallow Questionnaire (SSQ) is a validated visual analogue scale, but has not been used in persons with MS. We aimed to capture patient-reported swallowing outcomes in a large group of persons with MS and compare dysphagia complaints with other MS symptoms.
Six hundred and fifty-three adults with MS (mean age=51.71±12.72yrs; 509 female) completed an online survey consisting of the DYMUS, SSQ, PDDS, MFIS, MSIS- 29, and subsections of the NeuroQOL. Spearman’s rank correlation and logistic regressions were performed. We hypothesized there would be significant relationships between the SSQ and DYMUS, and that disease duration and general MS symptoms, including fatigue, would predict abnormal scores on the SSQ and DYMUS.
Average total scores were DYMUS: 3.13/10 (SD=2.99), SSQ: 280.86/1700 (SD=281.12), PDDS: 3.54/8 (SD=1.95), MFIS: 41.7/84 (SD=19.8), and MSIS: 74.97/145 (SD=24.79). 49.83% of respondents had abnormal DYMUS (>3) scores and 41.71% of respondents had abnormal SSQ (>234) scores. 69.02% of respondents with abnormal DYMUS and 69.04% of respondents with abnormal SSQ scores reported never receiving instrumented swallowing evaluation. DYMUS and SSQ scores were significantly positively correlated (r=0.822, p<0.001).
Abnormal DYMUS scores were best described by Communication NeuroQOL (OR=0.839, p<0.001) and total MFIS (OR=1.035, p<0.001). Abnormal SSQ scores were best described by Communication NeuroQOL (OR=0.8545, p<0.001), total MSIS (OR=1.023, p<0.001), and sex (OR(male)=0.513, p=0.001).
A large proportion of respondents with complaints of dysphagia had not undergone an instrumented swallow study, suggesting that swallowing concerns are not being appropriately evaluated and treated. Furthermore, the DYMUS showed strong convergent validity to the SSQ. Abnormal DYMUS and SSQ scores were best described using a combination of questionnaires including the MFIS and Communication NeuroQOL, suggesting that fatigue and communication should be evaluated and considered in assessment and management of dysphagia. More widespread use of dysphagia questionnaires, including the introduction of electronic versions, is recommended.