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Quality of Life Research
Gepubliceerd in:

01-10-2016

HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties

Auteurs: N. E. Carlozzi, S. G. Schilling, J.-S. Lai, J. S. Perlmutter, M. A. Nance, J. F. Waljee, J. A. Miner, S. K. Barton, S. M. Goodnight, P. Dayalu

Gepubliceerd in: Quality of Life Research | Uitgave 10/2016

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Abstract

Purpose

Huntington disease (HD) is an autosomal dominant neurodegenerative disease which results in several progressive symptoms, including bulbar dysfunction (i.e., speech and swallowing difficulties). Although difficulties in speech and swallowing in HD have a negative impact on health-related quality of life, no patient-reported outcome measure exists to capture these difficulties that are specific to HD. Thus, we developed a new patient-reported outcome measure for use in the Huntington Disease Health-Related Quality of Life (HDQLIFE) Measurement System that focused on the impact that difficulties with speech and swallowing have on HRQOL in HD.

Methods

Five hundred and seven individuals with prodromal and/or manifest HD completed 47 newly developed items examining speech and swallowing difficulties. Unidimensional item pools were identified using exploratory factor analysis and confirmatory factor analysis (EFA and CFA, respectively). Item response theory (IRT) was used to calibrate the final measures.

Results

EFA and CFA identified two separate unidimensional sets of items: Speech Difficulties (27 items) and Swallowing Difficulties (16 items). Items were calibrated separately for these two measures and resulted in item banks that can be administered as computer adaptive tests (CATs) and/or 6-item, static short forms. Reliability of both of these measures was supported through high correlations between the simulated CAT scores and the full item bank.

Conclusions

CATs and 6-item calibrated short forms were developed for HDQLIFE Speech Difficulties and HDQLIFE Swallowing Difficulties. These measures both demonstrate excellent psychometric properties and may have clinical utility in other populations where speech and swallowing difficulties are prevalent.
vorige artikel New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)
volgende artikel The development of a new computer adaptive test to evaluate chorea in Huntington disease: HDQLIFE Chorea
Literatuur
1.
Roos, R. A. C., Hermans, J., Vegtervandervlis, M., Vanommen, G. J. B., & Bruyn, G. W. (1993). Duration of illness in Huntingtons-disease is not related to age at onset. Journal of Neurology, Neurosurgery and Psychiatry, 56(1), 98–100.PubMedPubMedCentralCrossRef
2.
Albin, R. L., Reiner, A., Anderson, K. D., Penney, J. B., & Young, A. B. (1990). Striatal and nigral neuron subpopulations in rigid huntingtons-disease—implications for the functional-anatomy of chorea and rigidity-Akinesia. Annals of Neurology, 27(4), 357–365.PubMedCrossRef
3.
Coyle, J. T., & Schwarcz, R. (1976). Lesion of striatal neurons with kainic acid provides a model for huntingtons-chorea. Nature, 263(5574), 244–246.PubMedCrossRef
4.
Marshall, F. J., Walker, F., Frank, S., Oakes, D., Plumb, S., Factor, S. A., et al. (2006). Tetrabenazine as antichorea therapy in Huntington disease: a randomized controlled trial. Neurology, 66(3), 366–372.CrossRef
5.
Metman, L. V., Morris, M. J., Farmer, C., Gillespie, M., Mosby, K., Wuu, J., & Chase, T. N. (2002). Huntington’s disease: A randomized, controlled trial using the NMDA-antagonist amantadine. Neurology, 59(5), 694–699.CrossRef
6.
Hartelius, L., Carlstedt, A., Ytterberg, M., Lillvik, M., & Laakso, K. (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.
7.
Skodda, S., Schlegel, U., Hoffmann, R., & Saft, C. (2014). Impaired motor speech performance in premotor stages of Huntington’s disease (HD) over time - A longitudinal investigation. Movement Disorders, 29, S217.
8.
Heemskerk, A. W., & Roos, R. A. C. (2011). Dysphagia in Huntington’s disease: A review. Dysphagia, 26(1), 62–66.PubMedCrossRef
9.
Lanska, D. J., Lavine, L., Lanska, M. J., & Schoenberg, B. S. (1988). Huntingtons-disease mortality in the United-States. Neurology, 38(5), 769–772.PubMedCrossRef
10.
Sorensen, S. A., & Fenger, K. (1992). Causes of death in patients with Huntington’s-disease and in unaffected 1st degree relatives. Journal of Medical Genetics, 29(12), 911–914.PubMedPubMedCentralCrossRef
11.
Unified Huntington’s Disease Rating Scale: reliability and consistency. Huntington Study Group. (1996). Mov Disord, 11(2), 136–142.
12.
13.
Cella, D., Nowinski, C., Peterman, A., Victorson, D., Miller, D., Lai, J.-S., & Moy, C. (2011). The neurology quality of life measurement (Neuro-QOL) initiative. Archives of Physical Medicine and Rehabilitation, Supplement, 92(Suppl 1), S28–S36.CrossRef
14.
Gershon, R. C., Lai, J. S., Bode, R., Choi, S., Moy, C., Bleck, T., Miller, D., Peterman, A., & Cella, D. (2012). Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Quality of Life Research, 21(3), 475–486.PubMedCrossRef
15.
Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested in its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63, 1179–1194.PubMedPubMedCentralCrossRef
16.
Heemskerk, A. W., Verbist, B. M., Marinus, J., Heijnen, B., Sjogren, E. V., & Roos, R. A. C. (2014). The Huntington’s disease dysphagia scale. Movement Disorders, 29(10), 1312–1316.PubMedCrossRef
17.
McHorney, C. A., Martin-Harris, B., Robbins, J., & Rosenbek, J. (2006). Clinical validity of the SWAL-QOL and SWAL-CARE outcome tools with respect to bolus flow measures. Dysphagia, 21(3), 141–148.PubMedCrossRef
18.
McHorney, C. A., Robbins, J., Lomax, K., Rosenbek, J. C., Chignell, K., Kramer, A. E., & Bricker, D. E. (2002). The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III Documentation of reliability and validity. Dysphagia, 17(2), 97–114.PubMedCrossRef
19.
Carlozzi, N. E., Schilling, S. G., J.-S., L., Paulsen, J. S., Hahn, E. A., Perlmutter, J. S., Ross, C. A., Downing, N. R., Kratz, A. L., McCormack, M. K., Nance, M. A., Quaid, K. A., Stout, J., Gershon, R. C., Ready, R., Miner, J. A., Barton, S. K., Perlman, S. L., Rao, S. M., Frank, S., Shoulson, I., Marin, H., Geschwind, M. D., Dayalu, P., Foroud, T., Goodnight, S. M., & Cella, D. (in press). HDQLIFE: Development and assessment of health-related quality of life in Huntington disease (HD). Quality of Life Research.
20.
Carlozzi, N. E., Downing, N. R., McCormack, M. K., Schilling, S. G., Perlmutter, J. S., Hahn, E. A., Lai, J.-S., Frank, S., Quaid, K. A., Paulsen, J. S., Cella, D., Goodnight, S. M., Miner, J. A., & Nance, M. A. (in press). New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient reported outcomes measurement system). Quality of Life Research.
21.
Carlozzi, N. E., Downing, N. R., Schilling, S. G., J.-S., L., Goodnight, S. M., Miner, J. A., & Frank, S. (in press). The development of a new computer adaptive test to evaluate chorea in Huntington Disease: HDQLIFE Chorea. Quality of Life Research.
22.
23.
Hanauer, D. A., Mei, Q., Law, J., Khanna, R., & Zheng, K. (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.PubMedPubMedCentralCrossRef
24.
Paulsen, J. S., Hayden, M., Stout, J. C., Langbehn, D. R., Aylward, E., Ross, C. A., et al. (2006). Preparing for preventive clinical trials—The predict-HD study. Archives of Neurology, 63(6), 883–890.PubMedCrossRef
25.
Carlozzi, N. E., & Tulsky, D. S. (2013). Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease. Journal of Health Psychology, 18(2), 212–225.PubMedCrossRef
26.
Shoulson, I., & Fahn, S. (1979). Huntington disease—clinical care and evaluation. Neurology, 29(1), 1–3.PubMedCrossRef
27.
Muthén, L. K., & Muthén, B. O. (2011). Mplus user’s guide. Los Angeles, CA: Muthén and Muthén.
28.
Cook, K. F., Kallen, M. A., & Amtmann, D. (2009). Having a fit: impact of number of items and distribution of data on traditional criteria for assessing IRT’s unidimensionality assumption. Quality of Life Research, 18(4), 447–460.PubMedPubMedCentralCrossRef
29.
Reise, S. P., Morizot, J., & Hays, R. D. (2007). The role of the bifactor model in resolving dimensionality issues in health outcomes measures. Quality of Life Research, 16(Suppl 1), 19–31.PubMedCrossRef
30.
McDonald, R. P. (1999). Test theory: A unified treatment. Mahwah: Lawrence Erlbaum Associates Inc.
31.
Samejima, F., van der Liden, W. J., & Hambleton, R. (1996). The graded response model. In W. J. van der Liden (Ed.), Handbook of modern item response theory (pp. 85–100). NY, NY: Springer.
32.
Cai, L., Thissen, D., & du Toit, S. H. C. (2011). IRTPRO for windows [Computer software]. Lincolnwood, IL: Scientific Software International.
33.
Crane, P. K., Gibbons, L. E., Jolley, L., & van Belle, G. (2006). Differential item functioning analysis with ordinal logistic regression techniques, DIFdetect and difwithpar. Medical Care, 44(11 Suppl 3), S115–S123.PubMedCrossRef
34.
Choi, S. W., Gibbons, L. E., & Crane, P. K. (2011). lordif: An R package for detecting differential item functioning using iterative hybrid ordinal logistic regression/item response theory and monte carlo simulations. Journal of Statistical Software, 39(8), 1–30.PubMedPubMedCentralCrossRef
35.
Choi, S. W. (2009). Firestar: Computerized adaptive testing simulation program for polytomous item response theory models. Applied Psychological Measurement, 33(8), 644–645.CrossRef
Metagegevens
Titel
HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties
Auteurs
N. E. Carlozzi
S. G. Schilling
J.-S. Lai
J. S. Perlmutter
M. A. Nance
J. F. Waljee
J. A. Miner
S. K. Barton
S. M. Goodnight
P. Dayalu
Publicatiedatum
01-10-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 10/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1273-y

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