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Quality of Life Research
Gepubliceerd in: Quality of Life Research 1/2021

24-08-2020

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

Auteurs: Noelle E. Carlozzi, Nicholas R. Boileau, Angela Roberts, Praveen Dayalu, Dana L. Hanifan, Jennifer A. Miner, Daniel Claassen, Emily Mower Provost

Gepubliceerd in: Quality of Life Research | Uitgave 1/2021

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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.
vorige artikel The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury
volgende artikel An item response theory analysis of an item pool for the recovering quality of life (ReQoL) measure
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Literatuur
1.
Ho, L. W., et al. (2001). The molecular biology of Huntington’s disease. Psychological Medicine, 31(1), 3–14.PubMed
2.
The Huntington’s Disease Collaborative Research Group. (1993). A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell, 72, 971–983.
3.
Ross, C. A., et al. (2014). Huntington disease: Natural history, biomarkers and prospects for therapeutics. Nature Reviews Neurology, 10(4), 204–216.PubMed
4.
Squitieri, F., et al. (2015). Epidemiology of Huntington disease: First post-HTT gene analysis of prevalence in Italy. Clinical Genetics, 89, 367–370.PubMed
5.
Evans, S. J. W., et al. (2013). Prevalence of adult Huntington’s disease in the UK based on diagnoses recorded in general practice records. Journal of Neurology Neurosurgery and Psychiatry, 84(10), 1156–1160.
6.
Carlozzi, N. E., et al. (2016). HDQLIFE: Development and assessment of health-related quality of life in Huntington disease (HD). Quality of Life Research, 25(10), 212–225.
7.
Young, A. B., et al. (2011). Huntington’s disease in Venezuela: Neurologic features and functional decline. Neurology, 76(17), 1484–1484.
8.
Hertrich, I., & Ackermann, H. (1994). Acoustic analysis of speech timing in Huntington’s disease. Brain and Language, 47(2), 182–196.PubMed
9.
Skodda, S., et al. (2014). Impaired motor speech performance in Huntington’s disease. Journal of Neural Transmission, 121(4), 399–407.PubMed
10.
Rusz, J., et al. (2015). Automatic evaluation of speech rhythm instability and acceleration in dysarthrias associated with basal ganglia dysfunction. Frontier in Bioengineering and Biotechnology, 3, 104.
11.
Rusz, J., et al. (2013). Objective acoustic quantification of phonatory dysfunction in Huntington’s disease. PLoS ONE, 8(6), e65881.PubMedPubMedCentral
12.
Hartelius, L., et al. (2003). Speech disorders in mild and moderate Huntington disease: Results of dysarthria assessments of 19 individuals. Journal of Medical Speech-Language Pathology, 11(1), 1–14.
13.
Diehl, S.K., et al. 2017. Speech perceptual characteristics of individuals with dysarthria secondary to Huntington’s disease, in American Speech Language Hearing Association Annual National Convention. Los Angeles, CA.
14.
Murray, L. L. (2000). Spoken language production in Huntington’s and Parkinson’s diseases. Journal of Speech, Language, and Hearing Research, 43(6), 1350–1366.PubMed
15.
Murray, L. L., & Stout, J. C. (1999). Discourse comprehension in Huntington’s and Parkinson’s diseases. American Journal of Speech-Language Pathology, 8(2), 137–148.
16.
Murray, L. L., & Lenz, L. P. (2001). Productive syntax abilities in Huntington’s and Parkinson’s diseases. Brain and Cognition, 46(1–2), 213–219.PubMed
17.
Saldert, C., et al. (2010). Comprehension of complex discourse in different stages of Huntington’s disease. Int J Lang Commun Disord, 45(6), 656–669.PubMed
18.
Gagnon, M., Barrette, J., & Macoir, J. (2018). Language Disorders in Huntington Disease: A Systematic Literature Review. Cognitive and Behavioral Neurology, 31(4), 179–192.PubMed
19.
20.
Azambuja, M. J., et al. (2007). Semantic, phonologic, and verb fluency in Huntington’s disease. Dementia & Neuropsychologia, 1(4), 381–385.
21.
Frank, E. M., McDade, H. L., & Scott, W. K. (1996). Naming in dementia secondary to Parkinson’s, Huntington’s, and Alzheimer’s diseases. Journal of Communication Disorders, 29(3), 183–197.PubMed
22.
Azambuja, M. J., et al. (2012). Language impairment in Huntington’s disease. Arquivos de Neuro-Psiquiatria, 70(6), 410–415.PubMed
23.
Chenery, H. J., Copland, D. A., & Murdoch, B. E. (2002). Complex language functions and subcortical mechanisms: Evidence from Huntington’s disease and patients with non-thalamic subcortical lesions. International Journal of Language & Communication Disorders, 37(4), 459–474.
24.
25.
Nemeth, D., et al. (2012). Language deficits in pre-symptomatic Huntington’s disease: Evidence from Hungarian. Brain and Language, 121(3), 248–253.PubMedPubMedCentral
26.
Chan, J. C. S., Stout, J. C., & Vogel, A. P. (2019). Speech in prodromal and symptomatic Huntington’s disease as a model of measuring onset and progression in dominantly inherited neurodegenerative diseases. Neuroscience and Biobehavioral Reviews, 107, 450–460.PubMed
27.
Heemskerk, A. W., & Roos, R. A. C. (2011). Dysphagia in Huntington’s disease: A review. Dysphagia, 26(1), 62–66.PubMed
28.
de Tommaso, M., et al. (2015). Dysphagia in Huntington’s Disease: Correlation with clinical features. European Neurology, 74(1–2), 49–53.PubMed
29.
Andrich, J. E., et al. (2009). Upper gastrointestinal findings in Huntington’s disease: Patients suffer but do not complain. Journal of Neural Transmission (Vienna), 116(12), 1607–1611.
30.
Huntington Study Group. (1996). Unified Huntington’s Disease Rating Scale: Reliability and consistency. Movement Disorders, 11(2), 136–142.
31.
Skodda, S., et al. (2014). Impaired motor speech performance in premotor stages of Huntington’s disease (HD). Movement Disorders, 29, S217–S217.
32.
Manor, Y., et al. (2019). Dysphagia characteristics in Huntington’s disease patients: Insights from the Fiberoptic Endoscopic Evaluation of Swallowing and the Swallowing Disturbances Questionnaire. Cns Spectrums, 24(4), 413–418.PubMed
33.
Heemskerk, A. W., et al. (2014). The Huntington’s Disease Dysphagia Scale. Movement Disorders, 29(10), 1312–1316.PubMed
34.
35.
Barkmeier-Kraemer, J. M., & Clark, H. M. (2017). Speech-language pathology evaluation and management of hyperkinetic disorders affecting speech and swallowing function. Tremor and Other Hyperkinetic Movements 7 (N Y), 7, 489.
36.
Carlozzi, N. E., et al. (2016). HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties. Quality of Life Research, 25(10), 2417–2427.PubMedPubMedCentral
37.
Lai, J. S., et al. (2011). How item banks and its applications can influence measurement practice in rehabilitation medicine: A PROMIS fatigue item bank example. Archives of Physical Medicine and Rehabilitation, 92(Supp 1), S20–S27.PubMedPubMedCentral
38.
Carlozzi, N. E., et al. (2017). Patient-reported outcomes in Huntington disease: Neuro-QOL and HDQLIFE Physical Function Measures. Movement Disorders, 32(7), 1096–1102.PubMedPubMedCentral
39.
Carlozzi, N. E., et al. (2020). HDQLIFE and neuro-QoL physical function measures: Responsiveness in persons with Huntington’s disease. Movement Disorders, 35(2), 326–336.PubMed
40.
Hanauer, D. A., et al. (2015). Supporting information retrieval from electronic health records: A report of University of Michigan’s nine-year experience in developing and using the Electronic Medical Record Search Engine (EMERSE). Journal of Biomedical Informatics, 55, 290–300.PubMedPubMedCentral
41.
42.
Reilly, J., & Fisher, J. L. (2012). Sherlock Holmes and the strange case of the missing attribution: A historical note on “The Grandfather Passage”. Journal of Speech, Language, and Hearing Research, 55, 84–88.PubMed
43.
Van Riper, C. (1963). Speech correction: Principles and methods (4th ed.). Englewood Cliffs, NJ: Prentice-Hall.
44.
Cohen, R. (1988). Statistical power analysis for the behavioral sciences (2nd edition) (2nd ed.). Hillsdale, MI: Lawrence Erlbaum Associates.
45.
Patel, R. R., et al. (2018). Recommended protocols for instrumental assessment of voice: American Speech-Language-Hearing Association Expert panel to develop a protocol for instrumental assessment of vocal function. American Journal of Speech-Language Pathology, 27(3), 887–905.PubMed
46.
Maryn, Y., et al. (2009). Acoustic measurement of overall voice quality: A meta-analysisa). The Journal of the Acoustical Society of America, 126(5), 2619–2634.PubMed
47.
Carlozzi, N. E., et al. (2017). Patient-reported outcomes in Huntington’s disease: Quality of life in neurological disorders (Neuro-QoL) and Huntington’s disease health-related quality of life (HDQLIFE) physical function measures. Movement Disorders, 32(7), 1096–1102.PubMedPubMedCentral
48.
Carlozzi, N. E., et al. (2016). HDQLIFE: Development and assessment of health-related quality of life in Huntington disease (HD). Quality of Life Research, 25(10), 2441–2455.PubMedPubMedCentral
49.
Baylor, C., et al. (2013). The Communicative Participation Item Bank (CPIB): Item Bank calibration and development of a disorder-generic short form. Journal of Speech Language and Hearing Research, 56(4), 1190–1208.
50.
Rabin, R., & de Charro, F. (2001). EQ-5D: a measure of health status from the EuroQol Group. Annals of Medicine, 33(5), 337–343.PubMed
51.
Brazier, J. E., et al. (1996). Using the SF-36 and Euroqol on an elderly population. Quality of Life Research, 5(2), 195–204.PubMed
52.
Luo, N., et al. (2005). Self-reported health status of the general adult U.S. population as assessed by the EQ-5D and Health Utilities Index. Medical Care, 43(11), 1078–1086.PubMed
53.
Fryback, D. G., et al. (2007). US norms for six generic health-related quality-of-life indexes from the National Health Measurement study. Medical Care, 45(12), 1162–1170.PubMedPubMedCentral
54.
Johnson, J. A., & Coons, S. J. (1998). Comparison of the EQ-5D and SF-12 in an adult US sample. Quality of Life Research, 7(2), 155–166.PubMed
55.
Dyer, M. T., et al. (2010). A review of health utilities using the EQ-5D in studies of cardiovascular disease. Health and Quality of Life Outcomes, 8, 13.PubMedPubMedCentral
56.
Calvert, M. J., Freemantle, N., & Cleland, J. G. (2005). The impact of chronic heart failure on health-related quality of life data acquired in the baseline phase of the CARE-HF study. European Journal of Heart Failure, 7(2), 243–251.PubMed
57.
Dorman, P., et al. (1998). Qualitative comparison of the reliability of health status assessments with the EuroQol and SF-36 questionnaires after stroke. United Kingdom Collaborators in the International Stroke Trial. Stroke, 29(1), 63–68.PubMed
58.
Hurst, N. P., et al. (1997). Measuring health-related quality of life in rheumatoid arthritis: Validity, responsiveness and reliability of EuroQol (EQ-5D). British Journal of Rheumatology, 36(5), 551–559.PubMed
59.
Carlozzi, N. E., et al. (2015). Validity of the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) in individuals with Huntington disease (HD). Quality of Life Research, 24(8), 1963–1971.PubMedPubMedCentral
60.
Ustun, T. B., et al. (2010). Developing the World Health Organization Disability Assessment Schedule 2.0. Bulletin of the World Health Organization, 88, 815–823.PubMedPubMedCentral
61.
Kim, J.I., et al., Performance of the 12-item WHODAS 2.0 in prodromal Huntingon disease. European Journal of Human Genetics, In Press.
62.
Downing, N. R., et al. (2013). WHODAS 2.0 in prodromal Huntington disease: measures of functioning in neuropsychiatric disease. European Journal of Human Genetics, 22(8), 958–963.PubMedPubMedCentral
63.
Sousa, R. M., et al. (2010). Measuring disability across cultures–the psychometric properties of the WHODAS II in older people from seven low- and middle-income countries. The 10/66 Dementia Research Group population-based survey. International Journal of Methods in Psychiatric Research, 19(1), 1–17.PubMedPubMedCentral
64.
Rehm, J., et al. (2006). On the development and psychometric testing of the WHO screening instrument to assess disablement in the general population. International Journal of Methods in Psychiatric Research, 8(2), 110–122.
65.
Andrews, G., et al. (2009). Normative data for the 12 item WHO Disability Assessment Schedule 2.0. PLoS ONE, 4(12), e8343.PubMedPubMedCentral
66.
Carlozzi, N. E., et al. (2014). Understanding the outcomes measures used in Huntington disease pharmacological trials: A systematic review. Journal of Huntington’s Disease, 3(3), 233–252.PubMedPubMedCentral
67.
Shoulson, I., Kurlan, R., & Rubin, A. J. (1989). Assessment of functional capacity in neurodegenerative movement disorders: Huntington’s disease as a prototype. In T. L. Munsat (Ed.), Quantification of Neurological Deficit (pp. 271–283). Boston: Butterworths.
68.
Perez, M., et al. (2018). Classification of Huntington Disease using acoustic and lexical features (pp. 1898–1902). Shanghai: Interspeech.
69.
MacWhinney, B. (2000). The CHILDES Project: Tools for Analyzing Talk (3rd ed.). Mahwah, NJ: Lawrence Erlbaum Associates.
70.
Liu, D., et al. (2015). Motor onset and diagnosis in Huntington disease using the diagnostic confidence level. Journal of Neurology, 262(12), 2691–2698.PubMedPubMedCentral
71.
Marder, K., et al. (2000). Rate of functional decline in Huntington’s disease. Neurology, 54(2), 452–452.PubMed
72.
Gershon, R. C., et al. (2010). The use of PROMIS and assessment center to deliver patient-reported outcome measures in clinical research. Journal of Applied Measurement, 11(3), 304–314.PubMedPubMedCentral
73.
Fisher, R. (1922). On the Interpretation of χ2 from Contingency Tables, and the Calculation of P. Journal of the Royal Statistical Society, 85(1), 8.
74.
Cronbach, L. G. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297–334.
75.
Cohen, R., & Swerdlik, M. (2010). Psychological testing and assessment. Burr Ridge,IL: McGraw-Hill.
76.
Tavakol, M., & Dennick, R. (2011). Post-examination analysis of objective tests. Medical Teacher, 33(6), 447–458.PubMed
77.
Weir, J. P. (2005). Quantifying test-retest reliability using the intraclass correlation coefficient and the SEM. The Journal of Strength & Conditioning Research, 19(1), 231–240.
78.
Beckerman, H., et al. (2001). Smallest real difference, a link between reproducibility and responsiveness. Quality of Life Research, 10, 571–578.PubMed
79.
Beaton, D. E., et al. (2001). Looking for important change/differences in studies of responsiveness. OMERACT MCID Working Group. Outcome Measures in Rheumatology. Minimal Clinically Important Difference. The Journal of rheumatology, 28(2), 400–405.PubMed
80.
Flansbjer, U., et al. (2005). Reliability of gait performance tests in men and women with hemiparesis after stroke. Journal of Rehabilitation Medicine, 37, 75–82.PubMed
81.
Cramer, D., & Howitt, D. L. (2004). The Sage dictionary of statistics. Thousand Oaks, CA: SAGE.
82.
Andresen, E. M. (2000). Criteria for assessing the tools of disability outcomes research. Archives of Physical Medicine and Rehabilitation, 81(12 Suppl 2), S15–S20.PubMed
83.
Campbell, D. T., & Fiske, D. W. (1959). Convergent and discriminant validation by the multitrait-multimethod matrix. Psychological Bulletin, 56(2), 81–105.PubMed
84.
Metz, C. (1978). Basic principles of ROC analysis. Seminars in Nuclear Medicine, 8(4), 283–298.PubMed
85.
Youngstrom, E. (2014). A primer on receiver operating characteristic analysis and diagnostic efficiency statistics for pediatric psychology: We are ready to ROC. Journal of Pediatric Psychology, 39(2), 204–211.PubMed
86.
Zweig, M., & Campbell, G. (1993). Receiver-Operating Characteristic (ROC) Plots: A fundamental evaluation tool in clinical medicine. Clinical Chemistry, 39(4), 561–577.PubMed
87.
Youden, W. (1950). Index for rating diagnostic tests. Cancer, 3(1), 32–35.PubMed
88.
Grimes, D. A., & Schulz, K. F. (2005). Refining clinical diagnoses with likelihood ratios. Lancet, 365, 1500–1505.PubMed
89.
90.
91.
McCusker, E., & Loy, C. T. (2014). The many facets of unawareness in Huntington disease. Tremor and Other Hyperkinetic Movements (N Y), 4, 257.
92.
Deckel, A. W., & Morrison, D. (1996). Evidence of a neurologically based “denial of illness” in patients with Huntington’s disease. Archives of Clinical Neuropsychology, 11(4), 295–302.PubMed
93.
Vitale, C., et al. (2001). Unawareness of dyskinesias in Parkinson’s and Huntington’s diseases. Neurological Sciences, 22(1), 105–106.PubMed
94.
Chatterjee, A., et al. (2005). A comparison of self-report and caregiver assessment of depression, apathy, and irritability in Huntington’s disease. Journal of Neuropsychiatry and Clinical Neurosciences, 17(3), 378–383.
95.
Duff, K., et al. (2010). “Frontal” behaviors before the diagnosis of Huntington’s disease and their relationship to markers of disease progression: Evidence of early lack of awareness. Journal of Neuropsychiatry and Clinical Neurosciences, 22(2), 196–207.
96.
Lu, F. L., & Matteson, S. (2014). Speech tasks and interrater reliability in perceptual voice evaluation. Journal of Voice, 28(6), 725–732.PubMed
97.
Speyer, R., et al. (2010). Maximum phonation time: Variability and reliability. Journal of Voice, 24(3), 281–284.PubMed
Metagegevens
Titel
Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks
Auteurs
Noelle E. Carlozzi
Nicholas R. Boileau
Angela Roberts
Praveen Dayalu
Dana L. Hanifan
Jennifer A. Miner
Daniel Claassen
Emily Mower Provost
Publicatiedatum
24-08-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 1/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02608-0

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