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The Huntington's disease dysphagia scale

Authors

  • Anne-Wil Heemskerk MSc,

    Corresponding author
    1. Department of Neurology, Leiden University Medical Centre (LUMC), Leiden, the Netherlands
    2. Huntingtoncentre Topaz Overduin, Katwijk, the Netherlands
    • Correspondence to: W.A. Heemskerk, MSc, Leiden University Medical Centre (LUMC), Department of Neurology, Albinusdreef 2, PO Box 9600 2300RC Leiden, The Netherlands, E-mail: w.a.heemskerk@lumc.nl

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  • Berit M. Verbist MD, PhD,

    1. Department of Radiology, Leiden University Medical Centre (LUMC), Leiden, the Netherlands
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  • Johan Marinus PhD,

    1. Department of Neurology, Leiden University Medical Centre (LUMC), Leiden, the Netherlands
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  • Bas Heijnen MSc,

    1. Department of Otorhinolaryngology and Head and Neck Surgery, Leiden University Medical Centre (LUMC), Leiden, the Netherlands
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  • Elisabeth V. Sjögren MD PhD,

    1. Department of Otorhinolaryngology and Head and Neck Surgery, Leiden University Medical Centre (LUMC), Leiden, the Netherlands
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  • Raymund A.C. Roos MD, PhD

    1. Department of Neurology, Leiden University Medical Centre (LUMC), Leiden, the Netherlands
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  • Funding agencies: This study was supported by Jacques and Gloria Gossweiler Foundation, a nonprofit organization under the Swiss law.

  • Relevant conflicts of interest/financial disclosures: Nothing to report.

  • Full financial disclosures and author roles may be found in the online version of this article.

ABSTRACT

Background

Little is known about the swallowing disturbances of patients with Huntington's disease; therefore, we developed the Huntington's Disease Dysphagia Scale.

Methods

The scale was developed in four stages: (1) item generation, (2) comprehension testing, (3) evaluation of reliability, (4) item reduction and validity testing. The questionnaire was presented twice to 50 Huntington's disease patients and their caregivers. The Kruskal-Wallis test was used to evaluate whether the severity of swallowing difficulties increased with advancing disease. Pearson's correlation coefficient was used to examine the construct validity with the Swallowing Disturbance Questionnaire.

Results

The final version contained 11 items with five response options and exhibited a Cronbach's alpha coefficient of 0.728. The severity of swallowing difficulties was significantly higher in more advanced Huntington's disease. The correlation with the Swallowing Disturbance Questionnaire was 0.734.

Conclusion

We developed a valid and reliable 11-item scale to measure the severity of dysphagia in Huntington's disease. © 2014 International Parkinson and Movement Disorder Society

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