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Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks

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Abstract

Purpose

As Huntington disease (HD) progresses, speech and swallowing difficulties become more profound. These difficulties have an adverse effect on health-related quality of life (HRQOL), thus psychometrically robust measures of speech and swallowing are needed to better understand the impact of these domains across the course of the disease. Therefore, the purpose of this study is to establish the clinical utility of two new patient-reported outcome measures (PROs), HDQLIFE Speech Difficulties and HDQLIFE Swallowing Difficulties.

Methods

Thirty-one participants with premanifest or manifest HD, and 31 age- and sex-matched healthy control participants were recruited for this study. Participants completed several PROs [HDQLIFE Speech Difficulties, HDQLIFE Swallowing Difficulties, Communication Participation Item Bank (CPIB)], as well as several clinician-rated assessments of speech and functioning. A computational algorithm designed to detect features of spoken discourse was also examined. Analyses were focused on establishing the reliability and validity of these new measures.

Results

Internal consistency was good for Swallowing (Cronbach’s alpha = 0.89) and excellent for Speech and the CPIB (both Cronbach’s alpha ≥ 0.94), and convergent/discriminant validity was supported. Known groups validity for the PROs was supported by significant group differences among control participants and persons with different stages of HD (all p < 0.0001). All PROs were able to distinguish those with and without clinician-rated dysarthria (likelihood ratios far exceeded the threshold for clinical decision making [all ≥ 3.28]).

Conclusions

Findings support the clinical utility of the HDQLIFE Speech and Swallowing PROs and the CPIB for use across the HD disease spectrum. These PROs also have the potential to be clinically useful in other populations.

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Acknowledgements

We thank the Investigators and Coordinators of this study, the study participants, the Huntington Study Group, and the Huntington’s Disease Society of America.

Funding

This work was supported by the National Institutes of Health (NIH), National Center for Advancing Translational Sciences (Grant No. UL1TR000433). In addition, a portion of this study sample was collected in conjunction with National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (Grant No. R01BS077946) and/or Enroll-HD (funded by the CHDI Foundation). Lastly, this work was also supported by the National Science Foundation (Grant No. CAREER-1651740).

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Authors and Affiliations

  1. Department of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 48109-2800, USA

    Noelle E. Carlozzi, Nicholas R. Boileau & Jennifer A. Miner

  2. Department of Communication Sciences and Disorders, Northwestern University, Evanston, IL, USA

    Angela Roberts

  3. Department of Neurology, University of Michigan, Ann Arbor, MI, USA

    Praveen Dayalu

  4. Department of Speech-Language Pathology, University of Michigan, Ann Arbor, MI, USA

    Dana L. Hanifan

  5. Department of Neurology, Vanderbilt University, Nashville, TN, USA

    Daniel Claassen

  6. Department of Computer Science and Engineering, University of Michigan, Ann Arbor, MI, USA

    Emily Mower Provost

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  1. Noelle E. Carlozzi
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Correspondence to Noelle E. Carlozzi.

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Carlozzi, N.E., Boileau, N.R., Roberts, A. et al. Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks. Qual Life Res 30, 251–265 (2021). https://doi.org/10.1007/s11136-020-02608-0

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