Purpose: This study describes swallow-related quality of life (SWAL-QOL) in patients with myotonic dystrophy type 1 (DM1) and investigates its association with swallowing function and disease severity. Methods: A SWAL-QOL questionnaire was completed by 75 DM1 patients and 25 healthy control subjects. The severity of the disease was evaluated using the muscular impairment rating scale (MIRS). Twenty-eight DM1 patients underwent a videofluroscopic swallowing examination (VFS). Spearman’s correlation coefficient was used to measure the direction and strength of associations. Results: The SWAL-QOL median scores were significantly lower for the DM1 group than for the healthy control group. The scores for the majority of the SWAL-QOL domains were lower in patients with proximal muscular weakness (MIRS 4 and 5). Postswallow vallecular pooling and piecemeal deglutition were the most impaired VFS outcome variables. Conclusion: Our results suggest that a multidimensional swallowing assessment is recommended for DM1 patients as SWAL-QOL and VFS measure different aspects of the swallowing function, thus providing complementary information.

Additional Metadata
Keywords Deglutition disorders, Dysphagia, Myotonic dystrophy, Quality of life, Videofluoroscopy
Persistent URL dx.doi.org/10.1007/s00405-020-05964-2, hdl.handle.net/1765/126363
Journal European Archives of Oto-Rhino-Laryngology
Citation
Pilz, W, Lima Passos, V, Verdonschot, R.J.C.G, Meijers, J. (Jolanda), Roodenburg, N, Halmans, Y. (Yana), … Baijens, L.W.J. (2020). Swallow-related quality of life and oropharyngeal dysphagia in myotonic dystrophy. European Archives of Oto-Rhino-Laryngology. doi:10.1007/s00405-020-05964-2