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18-12-2019

Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD)

Auteurs: Noelle E. Carlozzi, Nicholas R. Boileau, Jane S. Paulsen, Nancy R. Downing, Rebecca Ready, Joel S. Perlmutter, David Cella, Kelvin L. Chou, Michael K. McCormack, Stacey Barton, Jin-Shei Lai

Gepubliceerd in: Quality of Life Research | Uitgave 5/2020

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Abstract

Purpose

Individuals with Huntington disease (HD) experience progressive cognitive decline that may appear years before motor manifestations of the disease. These declines have a profound effect on health-related quality of life (HRQOL) over the disease course, and thus it is important that self-report measures of cognitive function are validated for use in longitudinal studies.

Methods

359 individuals with premanifest or manifest HD completed baseline and at least one follow-up (12- and 24-month) assessment. Neuro-QoL™ Cognitive Function was administered at each time-point. Participants completed a self-reported global rating of cognitive change, as well as performance-based cognitive changes (using the Symbol Digit Modalities Test). Standardized response means (SRMs) and general linear models evaluated whether Neuro-QoL™ Cognitive Function was responsive to change over time with respect to self-reported and performance-based anchors. Test–retest reliability and known-group validity were also examined.

Results

Responsiveness was supported by effect sizes that were small in magnitude, but in the expected direction relative to self-reported and performance-based change. General linear models generally supported 12- and 24-month responsiveness relative to self-reported cognitive change and 12-month responsiveness relative to performance-based change. Test–retest reliability was excellent, and the measure exhibited known-group validity.

Conclusion

Longitudinal analyses generally indicate that the Neuro-QoL™ Cognitive Function measure is sensitive to change over time in individuals with HD. Neuro-QoL Cognitive Function changes reflect self-reported cognitive change at 12 and 24 months and performance-based change at 12 months. This measure may be useful in clinical trials or longitudinal observation studies.
Literatuur
1.
go back to reference Fisher, E. R., & Hayden, M. R. (2014). Multisource ascertainment of Huntington disease in Canada: Prevalence and population at risk. Movement Disorders,29(1), 105–114.PubMed Fisher, E. R., & Hayden, M. R. (2014). Multisource ascertainment of Huntington disease in Canada: Prevalence and population at risk. Movement Disorders,29(1), 105–114.PubMed
2.
go back to reference Pringsheim, T., et al. (2012). The incidence and prevalence of Huntington’s disease: A systematic review and meta-analysis. Movement Disorders,27(9), 1083–1091.PubMed Pringsheim, T., et al. (2012). The incidence and prevalence of Huntington’s disease: A systematic review and meta-analysis. Movement Disorders,27(9), 1083–1091.PubMed
3.
go back to reference Paulson, H. L., & Albin, R. L. (2011). Huntington’s disease: Clinical features and routes to therapy. In D. C. Lo & R. E. Hughes (Eds.), Neurobiology of Huntington’s disease: Applications to drug discovery frontiers in neuroscience. Boca Raton: CRC Press. Paulson, H. L., & Albin, R. L. (2011). Huntington’s disease: Clinical features and routes to therapy. In D. C. Lo & R. E. Hughes (Eds.), Neurobiology of Huntington’s disease: Applications to drug discovery frontiers in neuroscience. Boca Raton: CRC Press.
4.
5.
go back to reference Paulsen, J. S., et al. (2008). Detection of Huntington’s disease decades before diagnosis: The predict-HD study. Journal of Neurology, Neurosurgery and Psychiatry,79(8), 874–880.PubMed Paulsen, J. S., et al. (2008). Detection of Huntington’s disease decades before diagnosis: The predict-HD study. Journal of Neurology, Neurosurgery and Psychiatry,79(8), 874–880.PubMed
6.
go back to reference Peavy, G. M., et al. (2010). Cognitive and functional decline in Huntington’s disease: Dementia criteria revisited. Movement Disorders,25(9), 1163–1169.PubMedPubMedCentral Peavy, G. M., et al. (2010). Cognitive and functional decline in Huntington’s disease: Dementia criteria revisited. Movement Disorders,25(9), 1163–1169.PubMedPubMedCentral
7.
go back to reference Lai, J. S., et al. (2018). Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Quality of Life Research,27(3), 811–822.PubMed Lai, J. S., et al. (2018). Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Quality of Life Research,27(3), 811–822.PubMed
8.
go back to reference Vaccarino, A. L., et al. (2011). Assessment of cognitive symptoms in prodromal and early Huntington disease. PLoS Currents,3, RRN1250.PubMedPubMedCentral Vaccarino, A. L., et al. (2011). Assessment of cognitive symptoms in prodromal and early Huntington disease. PLoS Currents,3, RRN1250.PubMedPubMedCentral
9.
go back to reference 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.PubMed 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.PubMed
10.
go back to reference Stroop, J. (1935). Studies of interference in serial verbal reactions. Journal of Experimental Psychology,18, 643–662. Stroop, J. (1935). Studies of interference in serial verbal reactions. Journal of Experimental Psychology,18, 643–662.
11.
go back to reference Smith, A. (1982). Symbol digit modalities test: Manual. Western Psychological Services: Los Angeles. Smith, A. (1982). Symbol digit modalities test: Manual. Western Psychological Services: Los Angeles.
12.
go back to reference Koss, E., et al. (1984). The Stroop color-word test: Indicator of dementia severity. International Journal of Neuroscience,24(1), 53–61.PubMed Koss, E., et al. (1984). The Stroop color-word test: Indicator of dementia severity. International Journal of Neuroscience,24(1), 53–61.PubMed
13.
go back to reference Benton, A. L., et al. (1994). Contributions to neuropsychological assessment (2nd ed.). New York: Oxford University Press. Benton, A. L., et al. (1994). Contributions to neuropsychological assessment (2nd ed.). New York: Oxford University Press.
14.
go back to reference 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 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
15.
go back to reference Williams, J. K., et al. (2015). Everyday cognition in prodromal Huntington disease. Neuropsychology,29(2), 255–267.PubMed Williams, J. K., et al. (2015). Everyday cognition in prodromal Huntington disease. Neuropsychology,29(2), 255–267.PubMed
16.
go back to reference Carlozzi, N. E., Grech, J., & Tulsky, D. S. (2013). Memory functioning in individuals with traumatic brain injury: An examination of the Wechsler Memory Scale-Fourth Edition (WMS-IV). Journal of Clinical and Experimental Neuropsychology,35(9), 906–914.PubMed Carlozzi, N. E., Grech, J., & Tulsky, D. S. (2013). Memory functioning in individuals with traumatic brain injury: An examination of the Wechsler Memory Scale-Fourth Edition (WMS-IV). Journal of Clinical and Experimental Neuropsychology,35(9), 906–914.PubMed
17.
go back to reference Derouesne, C., et al. (1999). Memory complaints in young and elderly subjects. International Journal of Geriatric Psychiatry,14(4), 291–301.PubMed Derouesne, C., et al. (1999). Memory complaints in young and elderly subjects. International Journal of Geriatric Psychiatry,14(4), 291–301.PubMed
18.
go back to reference Lautenschlager, N. T., et al. (2005). Subjective memory complaints with and without objective memory impairment: Relationship with risk factors for dementia. The American Journal of Geriatric Psychiatry,13(8), 731–734.PubMed Lautenschlager, N. T., et al. (2005). Subjective memory complaints with and without objective memory impairment: Relationship with risk factors for dementia. The American Journal of Geriatric Psychiatry,13(8), 731–734.PubMed
19.
go back to reference Mostafaie, N., et al. (2004). Mitochondrial genotype and risk for Alzheimer’s disease: Cross-sectional data from the Vienna-Transdanube-Aging “VITA” study. Journal of Neural Transmission (Vienna),111(9), 1155–1165. Mostafaie, N., et al. (2004). Mitochondrial genotype and risk for Alzheimer’s disease: Cross-sectional data from the Vienna-Transdanube-Aging “VITA” study. Journal of Neural Transmission (Vienna),111(9), 1155–1165.
20.
go back to reference Sawrie, S. M., et al. (1999). Subjective versus objective memory change after temporal lobe epilepsy surgery. Neurology,53(7), 1511–1517.PubMed Sawrie, S. M., et al. (1999). Subjective versus objective memory change after temporal lobe epilepsy surgery. Neurology,53(7), 1511–1517.PubMed
21.
go back to reference Schmidt, I. W., Berg, I. J., & Deelman, B. G. (2001). Relations between subjective evaluations of memory and objective memory performance. Perceptual and Motor Skills,93(3), 761–776.PubMed Schmidt, I. W., Berg, I. J., & Deelman, B. G. (2001). Relations between subjective evaluations of memory and objective memory performance. Perceptual and Motor Skills,93(3), 761–776.PubMed
22.
go back to reference Smith, G. E., et al. (1996). Subjective memory complaints, psychological distress, and longitudinal change in objective memory performance. Psychology and Aging,11(2), 272–279.PubMed Smith, G. E., et al. (1996). Subjective memory complaints, psychological distress, and longitudinal change in objective memory performance. Psychology and Aging,11(2), 272–279.PubMed
23.
go back to reference Zandi, T. (2004). Relationship between subjective memory complaints, objective memory performance, and depression among older adults. American Journal of Alzheimer’s Disease and Other Dementias,19(6), 353–360.PubMed Zandi, T. (2004). Relationship between subjective memory complaints, objective memory performance, and depression among older adults. American Journal of Alzheimer’s Disease and Other Dementias,19(6), 353–360.PubMed
24.
go back to reference Cella, D., et al. (2011). The neurology quality of life measurement (Neuro-QOL) initiative. Archives of Physical Medicine and Rehabilitation,92(Suppl 1), S28–S36.PubMedPubMedCentral Cella, D., et al. (2011). The neurology quality of life measurement (Neuro-QOL) initiative. Archives of Physical Medicine and Rehabilitation,92(Suppl 1), S28–S36.PubMedPubMedCentral
25.
go back to reference Gershon, R. C., et al. (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.PubMed Gershon, R. C., et al. (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.PubMed
26.
go back to reference 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 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
27.
go back to reference Novack, T. (2000). The Orientation Log. The Center for Outcome Measurement in Brain Injury. Novack, T. (2000). The Orientation Log. The Center for Outcome Measurement in Brain Injury.
28.
go back to reference 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 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
29.
go back to reference Huntington Study Group. (1996). Unified Huntington’s Disease Rating Scale: Reliability and consistency. Huntington Study Group. Movement Disorders,11(2), 136–142. Huntington Study Group. (1996). Unified Huntington’s Disease Rating Scale: Reliability and consistency. Huntington Study Group. Movement Disorders,11(2), 136–142.
30.
go back to reference Shoulson, I. (1981). Huntington disease: Functional capacities in patients treated with neuroleptic and antidepressant drugs. Neurology,31, 1333–1335.PubMed Shoulson, I. (1981). Huntington disease: Functional capacities in patients treated with neuroleptic and antidepressant drugs. Neurology,31, 1333–1335.PubMed
31.
go back to reference Marder, K., et al. (2000). Rate of functional decline in Huntington’s disease. Neurology,54(2), 452.PubMed Marder, K., et al. (2000). Rate of functional decline in Huntington’s disease. Neurology,54(2), 452.PubMed
32.
go back to reference SAS Institute. (2013). SAS 9.4 language reference concepts. Cary, NC: SAS Institute. SAS Institute. (2013). SAS 9.4 language reference concepts. Cary, NC: SAS Institute.
33.
go back to reference Cohen, J. (1969). Statistical power analysis for the behavioral sciences. New York: Academic Press. Cohen, J. (1969). Statistical power analysis for the behavioral sciences. New York: Academic Press.
34.
go back to reference Kopjar, B. (1996). The SF-36 health survey: A valid measure of changes in health status after injury. Injury Prevention,2, 135–139.PubMedPubMedCentral Kopjar, B. (1996). The SF-36 health survey: A valid measure of changes in health status after injury. Injury Prevention,2, 135–139.PubMedPubMedCentral
35.
go back to reference Dineen, K., et al. (2002). Meaningful change in cancer-specific quality-of-life scores: Differences between improvement and worsening. Clinical Therapeutics,24, 41–42. Dineen, K., et al. (2002). Meaningful change in cancer-specific quality-of-life scores: Differences between improvement and worsening. Clinical Therapeutics,24, 41–42.
36.
go back to reference Terwee, C. B., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology,60(1), 34–42.PubMed Terwee, C. B., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology,60(1), 34–42.PubMed
37.
go back to reference Victorson, D., et al. (2014). Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. Epilepsy Behavior,31, 77–84.PubMed Victorson, D., et al. (2014). Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. Epilepsy Behavior,31, 77–84.PubMed
38.
go back to reference Amtmann, D., et al. (2018). People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures. Disability and Health Journal,11(1), 99–107.PubMed Amtmann, D., et al. (2018). People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures. Disability and Health Journal,11(1), 99–107.PubMed
39.
go back to reference Kozlowski, A. J., et al. (2016). Evaluating individual change with the quality of life in neurological disorders (Neuro-QoL) short forms. Archives of Physical Medicine and Rehabilitation,97(4), 650–654.PubMed Kozlowski, A. J., et al. (2016). Evaluating individual change with the quality of life in neurological disorders (Neuro-QoL) short forms. Archives of Physical Medicine and Rehabilitation,97(4), 650–654.PubMed
40.
go back to reference Kamper, S. J., Maher, C. G., & Mackay, G. (2009). Global rating of change scales: A review of strengths and weaknesses and considerations for design. Journal of Manual and Manipulative Therapy,17(3), 163–170.PubMed Kamper, S. J., Maher, C. G., & Mackay, G. (2009). Global rating of change scales: A review of strengths and weaknesses and considerations for design. Journal of Manual and Manipulative Therapy,17(3), 163–170.PubMed
41.
go back to reference Cook, S., & Marsiske, M. (2006). Subjective memory beliefs and cognitive performance in normal and mildly impaired older adults. Aging & Mental Health,10(4), 413–423. Cook, S., & Marsiske, M. (2006). Subjective memory beliefs and cognitive performance in normal and mildly impaired older adults. Aging & Mental Health,10(4), 413–423.
42.
go back to reference Lineweaver, T. T., et al. (2004). Patients’ perceptions of memory functioning before and after surgical intervention to treat medically refractory epilepsy. Epilepsia,45(12), 1604–1612.PubMed Lineweaver, T. T., et al. (2004). Patients’ perceptions of memory functioning before and after surgical intervention to treat medically refractory epilepsy. Epilepsia,45(12), 1604–1612.PubMed
43.
go back to reference Jungwirth, S., et al. (2004). Subjective memory complaints and objective memory impairment in the Vienna-Transdanube aging community. Journal of the American Geriatrics Society,52(2), 263–268.PubMed Jungwirth, S., et al. (2004). Subjective memory complaints and objective memory impairment in the Vienna-Transdanube aging community. Journal of the American Geriatrics Society,52(2), 263–268.PubMed
44.
go back to reference Podewils, L. J., et al. (2003). Relationship of self-perceptions of memory and worry to objective measures of memory and cognition in the general population. Psychosomatics,44(6), 461–470.PubMed Podewils, L. J., et al. (2003). Relationship of self-perceptions of memory and worry to objective measures of memory and cognition in the general population. Psychosomatics,44(6), 461–470.PubMed
45.
go back to reference Reese, C. M., & Cherry, K. E. (2006). Effects of age and ability on self-reported memory functioning and knowledge of memory aging. Journal of Genetic Psychology,167(2), 221–240.PubMed Reese, C. M., & Cherry, K. E. (2006). Effects of age and ability on self-reported memory functioning and knowledge of memory aging. Journal of Genetic Psychology,167(2), 221–240.PubMed
46.
go back to reference Hutchinson, A. D., et al. (2012). Objective and subjective cognitive impairment following chemotherapy for cancer: A systematic review. Cancer Treatment Reviews,38(7), 926–934.PubMed Hutchinson, A. D., et al. (2012). Objective and subjective cognitive impairment following chemotherapy for cancer: A systematic review. Cancer Treatment Reviews,38(7), 926–934.PubMed
47.
go back to reference McCusker, E., & Loy, C. T. (2014). The many facets of unawareness in huntington disease. Tremor and Other Hyperkinetic Movements (N Y),4, 257. McCusker, E., & Loy, C. T. (2014). The many facets of unawareness in huntington disease. Tremor and Other Hyperkinetic Movements (N Y),4, 257.
48.
go back to reference 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 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
49.
go back to reference Vitale, C., et al. (2001). Unawareness of dyskinesias in Parkinson’s and Huntington’s diseases. Neurological Sciences,22(1), 105–106.PubMed Vitale, C., et al. (2001). Unawareness of dyskinesias in Parkinson’s and Huntington’s diseases. Neurological Sciences,22(1), 105–106.PubMed
50.
go back to reference 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.PubMed 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.PubMed
51.
go back to reference 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.PubMed 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.PubMed
52.
go back to reference Carlozzi, N. E., et al. (2018). Understanding patient-reported outcome measures in Huntington disease: At what point is cognitive impairment related to poor measurement reliability? Quality of Life Research,27(10), 2541–2555.PubMedPubMedCentral Carlozzi, N. E., et al. (2018). Understanding patient-reported outcome measures in Huntington disease: At what point is cognitive impairment related to poor measurement reliability? Quality of Life Research,27(10), 2541–2555.PubMedPubMedCentral
53.
go back to reference Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement,20(1), 10. Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement,20(1), 10.
54.
go back to reference Smith, K. M., & Dahodwala, N. (2014). Sex differences in Parkinson’s disease and other movement disorders. Experimental Neurology,259, 44–56.PubMed Smith, K. M., & Dahodwala, N. (2014). Sex differences in Parkinson’s disease and other movement disorders. Experimental Neurology,259, 44–56.PubMed
55.
go back to reference Tabrizi, S. J., et al. (2009). Biological and clinical manifestations of Huntington’s disease in the longitudinal TRACK-HD study: Cross-sectional analysis of baseline data. Lancet Neurology,8(9), 791–801.PubMedPubMedCentral Tabrizi, S. J., et al. (2009). Biological and clinical manifestations of Huntington’s disease in the longitudinal TRACK-HD study: Cross-sectional analysis of baseline data. Lancet Neurology,8(9), 791–801.PubMedPubMedCentral
56.
go back to reference Paulsen, J. S., et al. (2014). Clinical and biomarker changes in premanifest Huntington disease show trial feasibility: A decade of the PREDICT-HD study. Frontiers in Aging Neuroscience,6, 78.PubMedPubMedCentral Paulsen, J. S., et al. (2014). Clinical and biomarker changes in premanifest Huntington disease show trial feasibility: A decade of the PREDICT-HD study. Frontiers in Aging Neuroscience,6, 78.PubMedPubMedCentral
57.
go back to reference Dunn, K. M., et al. (2004). Patterns of consent in epidemiologic research: Evidence from over 25,000 responders. American Journal of Epidemiology,159(11), 1087–1094.PubMed Dunn, K. M., et al. (2004). Patterns of consent in epidemiologic research: Evidence from over 25,000 responders. American Journal of Epidemiology,159(11), 1087–1094.PubMed
58.
go back to reference 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 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
59.
go back to reference Eagan, T. M., et al. (2002). Nonresponse in a community cohort study: Predictors and consequences for exposure-disease associations. Journal of Clinical Epidemiology,55(8), 775–781.PubMed Eagan, T. M., et al. (2002). Nonresponse in a community cohort study: Predictors and consequences for exposure-disease associations. Journal of Clinical Epidemiology,55(8), 775–781.PubMed
60.
go back to reference Roberts, J. S., et al. (2004). Who seeks genetic susceptibility testing for Alzheimer’s disease? Findings from a multisite, randomized clinical trial. Genetics in Medicine,6(4), 197–203.PubMed Roberts, J. S., et al. (2004). Who seeks genetic susceptibility testing for Alzheimer’s disease? Findings from a multisite, randomized clinical trial. Genetics in Medicine,6(4), 197–203.PubMed
61.
go back to reference 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. 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.
62.
go back to reference Paulsen, J. S., et al. (2006). Preparing for preventive clinical trials: The predict-HD study. Archives of Neurology,63(6), 883–890.PubMed Paulsen, J. S., et al. (2006). Preparing for preventive clinical trials: The predict-HD study. Archives of Neurology,63(6), 883–890.PubMed
63.
go back to reference Folstein, S. E. (1989). Huntington’s disease: A disorder of families. Baltimore: Johns Hopkins University Press. Folstein, S. E. (1989). Huntington’s disease: A disorder of families. Baltimore: Johns Hopkins University Press.
64.
go back to reference 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 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
65.
go back to reference Narabayashi, H. (1973). Huntington’s chorea in Japan: Review of the literature. Advances in Neurology,1, 253–259. Narabayashi, H. (1973). Huntington’s chorea in Japan: Review of the literature. Advances in Neurology,1, 253–259.
66.
go back to reference Zhang, Y., et al. (2011). Indexing disease progression at study entry with individuals at-risk for Huntington disease. American Journal of Medical Genetics Part B-Neuropsychiatric Genetics,156B(7), 751–763. Zhang, Y., et al. (2011). Indexing disease progression at study entry with individuals at-risk for Huntington disease. American Journal of Medical Genetics Part B-Neuropsychiatric Genetics,156B(7), 751–763.
Metagegevens
Titel
Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD)
Auteurs
Noelle E. Carlozzi
Nicholas R. Boileau
Jane S. Paulsen
Nancy R. Downing
Rebecca Ready
Joel S. Perlmutter
David Cella
Kelvin L. Chou
Michael K. McCormack
Stacey Barton
Jin-Shei Lai
Publicatiedatum
18-12-2019
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-019-02391-7