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Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL—Quality of Life in Neurological Disorders and PROMIS—Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content.
New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD.
Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose.
HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD.
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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. CrossRef
Paulsen, J. S. (2010). Early detection of huntington disease. Future Neurology, 5(1), 85–104. CrossRef
Ross, C. A., et al. (1997). Huntington disease and the related disorder, dentatorubral–pallidoluysian atrophy (DRPLA). Medicine (Baltimore), 76(5), 305–338. CrossRef
Cella, D. F. (1995). Measuring quality of life in palliative care. Seminars in Oncology, 22(2 Suppl 3), 73–81. PubMed
World Health Organization, W. (1946). Preamble to the constitution of the World Health Organization as adopted by the International Health Conference. In International health conference, New York.
Campbell, A. J., Converse, P. E., & Rodgers, W. L. (1976). The quality of American life: Perceptions, evaluations, and satisfactions. New York: Russell Sage Foundation.
Patrick, D. L., & Erikson, P. (1988). What constitutes quality of life? Concepts and dimensions. Clinical Nutrition, 7(2), 53–63.
van der Linden, W. J., & Hambleton, R. K. (1997). Handbook of modern item response theory. New York: Springer. CrossRef
Choppin, B. (1981). Educational measurement and the item bank model. In C. Lacey & D. Lawton (Eds.), Issues in evaluation and accountability (pp. 204–221). London: Methuen.
Carlozzi, N. E., et al. (2016). 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. doi: 10.1007/s11136-016-1354-y.
Carlozzi, N. E., et al. (2016). The development of a new computer adaptive test to evaluate chorea in Huntington disease: HDQLIFE Chorea. Quality of Life Research.. doi: 10.1007/s11136-016-1307-5.
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. doi: 10.1007/s11136-016-1273-y.
PROMIS ® Instrument Development and Psychometric Evaluation Scientific Standards. http://www.nihpromis.org/Documents/PROMIS_Standards_050212.pdf.
Kisala, P., & Tulsky, D. (2010). Opportunities for CAT applications in medical rehabilitation: Development of targeted item banks. Journal of Applied Measurement, 11(3), 315–330. PubMed
Tourangeau, R. (1984). Cognitive sciences and survey methods. In T. Jabine, et al. (Eds.), Cognitive Aspects of survey methodology: Building a bridge between disciplines (pp. 73–100). Washington, DC: National Academy Press.
MetaMetrics. (1995). The LEXILE framework for reading. Durham, NC: MetaMetrics Inc.
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. PubMedPubMedCentralCrossRef
Huntington Study Group. (1996). Unified Huntington’s Disease Rating Scale: Reliability and consistency. Movement Disorders, 11(2), 136–142. CrossRef
Huntington Study Group. (2006). Tetrabenazine as antichorea therapy in Huntington disease: A randomized controlled trial. Neurology, 66(3), 366–372. CrossRef
National Institute on Neurological Disorders and Stroke: NINDS Common Data Elements. [cited May 23, 2011]. Available from: http://www.commondataelements.ninds.nih.gov/.
Smith, A. (1982). Symbol digit modalities test: Manual. Los Angeles: Western Psychological Services.
Stroop, J. R. (1992). Studies of interference in serial verbal reactions (Reprinted from Journal Experimental- Psychology, Vol. 18, pp. 643–662, 1935). Journal of Experimental Psychology- General, 121(1): 15–23.
Stroop, J. R. (1935). Studies of interference in serial verbal reactions. Journal of Experimental Psychology, 18, 643–662. CrossRef
Craufurd, D., Thompson, J. C., & Snowden, J. S. (2001). Behavioral changes in Huntington disease. Neuropsychiatry, Neuropsychology, & Behavioral Neurology, 14(4), 219–226.
World Health Organization, W. (2012). The World Health Organization Disability Assessment Scale, WHODAS II. Available from: http://www.who.int/icidh/whodas/generalinfo.html.
Lord, F. M. (1980). Applications of item response theory to practical testing problems. Hillside, NJ: Erlbaum.
De Ayala, R. J. (2009). The theory and practice of item response theory. New York: The Guilford Press.
PARSCALE. (2003). Scientific Software International Inc.: Lincolnwood, IL. http://www.ssicentral.com/irt/downloads.html.
Muthén, L. K., & Muthén, B. O. (2011). Mplus User’s Guide. Los Angeles, CA: Muthén & Muthén.
McDonald, R. P. (1999). Test theory: A unified treatment. Mahwah, NJ: Lawrence Erlbaum Associates Inc.
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: Springer.
Cai, L., Thissen, D., & du Toit, S. H. C. (2011). IRTPRO for windows [Computer software]. 2011, Lincolnwood, IL: Scientific Software International.
R Core Team. (2014). R: A language and environment for statistical computing. Vienna: R Foundation for Statistical Computing.
Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). New York: Academic Press.
Samejima, F. (1969). Estimation of latent ability using a response pattern of graded scores (Psychometric Monograph No. 17). Richmond, VA: Psychometric Society.
Bryant, F. B., & Yarnold, P. R. (1995). Principal components analysis and exploratory and confirmatory factor analysis. In L. G. Grimm & R. R. Yarnold (Eds.), Reading and understanding multivariate statistics (pp. 99–136). Washington, DC: American Psychological Association.
Gorsuch, R. L., & Analysis, Factor. (1983). Hillsdale. NJ: Lawrence Erlbaum Associates.
Clauser, B. E., & Hambleton, R. K. (1994). Review of differential item functioning, P. W. Holland, H. Wainer. Journal of Educational Measurement, 31(1), 88–92. CrossRef
Anastasi, A., & Urbina, S. (1997). Psychological testing (7th ed.). Upper Saddle River, NJ: Prentice Hall.
Burg, J. A., Allred, S. L., & Sapp, J. H, 2nd. (1997). The potential for bias due to attrition in the National Exposure Registry: An examination of reasons for nonresponse, nonrespondent characteristics, and the response rate. Toxicology and Industrial Health, 13(1), 1–13. PubMed
Huntington Study Group, P.I., et al. (2016). Clinical-genetic associations in the prospective Huntington at Risk Observational Study (PHAROS): Implications for clinical trials. JAMA Neurology, 73(1), 102–110. CrossRef
Folstein, S. E. (1989). Huntington’s disease: A disorder of families. Baltimore: Johns Hopkins University Press.
Hayden, M. R., MacGregor, J. M., & Beighton, P. H. (1980). The prevalence of Huntington’s chorea in South Africa. South African Medical Journal, 58, 193–196. PubMed
Narabayashi, H. (1973). Huntington’s chorea in Japan: Review of the literature. Advances in Neurology, 1, 253–259.
Bull, M. T., et al. (2014). A pilot study of virtual visits in Huntington disease. Journal of Huntington’s Disease, 3(2), 189–195. PubMed
- HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)
N. E. Carlozzi
S. G. Schilling
J. S. Paulsen
E. A. Hahn
J. S. Perlmutter
C. A. Ross
N. R. Downing
A. L. Kratz
M. K. McCormack
M. A. Nance
K. A. Quaid
J. C. Stout
R. C. Gershon
R. E. Ready
J. A. Miner
S. K. Barton
S. L. Perlman
S. M. Rao
M. D. Geschwind
S. M. Goodnight
- Springer International Publishing