Swallow-related quality of life and oropharyngeal dysphagia in myotonic dystrophy

Walmari Pilz*, Valeria Lima Passos, Rob J. Verdonschot, Jolanda Meijers, Nel Roodenburg, Yana Halmans, Catharina G. Faber, Bernd Kremer, Laura W. J. Baijens

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


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.

Original languageEnglish
Pages (from-to)2357-2362
Number of pages6
JournalEuropean Archives of Oto-Rhino-Laryngology
Issue number8
Publication statusPublished - Aug 2020


  • Deglutition disorders
  • Dysphagia
  • Myotonic dystrophy
  • Quality of life
  • Videofluoroscopy
  • TYPE-1
  • QOL

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