Performance of the 12-item WHODAS 2.0 in prodromal Huntington disease

Ji-In Kim, Jeffrey D Long, James A Mills, Nancy Downing, Janet K Williams, Jane S Paulsen, PREDICT-HD Investigators And Coordinators Of The Huntington Study Group, Zofia Helena Miedzybrodzka

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Abstract

The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 for routine clinical use. We tested the utility of the 12-item WHODAS 2.0 in prodromal Huntington disease. Using data from 726 participants and 630 companions over a 3-year follow-up, linear mixed models were fitted to test (1) baseline and longitudinal differences by progression group; (2) participant and companion differences within each group; and (3) sensitivity of the 12-item WHODAS in comparison to the 36-item WHODAS and the Total Functional Capacity (TFC) score from the Unified Huntington's Disease Rating Scale. Participants showed baseline group differences whereas companions showed baseline and longitudinal group differences. Companions reported worse functional decline over time than participants as the disease progresses. The 12-item WHODAS detected longitudinal change better than the 36-item WHODAS and the TFC in the medium progression group. Results suggest the 12-item WHODAS 2.0 can detect baseline and longitudinal differences in prodromal HD and may be useful in HD clinical trials.

Original languageEnglish
Pages (from-to)1584-1587
Number of pages4
JournalEJHG : European journal of human genetics : the official journal of the European Society of Human Genetics.
Volume23
Issue number11
Early online date4 Mar 2015
DOIs
Publication statusPublished - 2015

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Huntington Disease
Appointments and Schedules
Diagnostic and Statistical Manual of Mental Disorders
Linear Models
Clinical Trials

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Performance of the 12-item WHODAS 2.0 in prodromal Huntington disease. / Kim, Ji-In; Long, Jeffrey D; Mills, James A; Downing, Nancy; Williams, Janet K; Paulsen, Jane S; PREDICT-HD Investigators And Coordinators Of The Huntington Study Group ; Miedzybrodzka, Zofia Helena.

In: EJHG : European journal of human genetics : the official journal of the European Society of Human Genetics. , Vol. 23, No. 11, 2015, p. 1584-1587.

Research output: Contribution to journalArticle

Kim, J-I, Long, JD, Mills, JA, Downing, N, Williams, JK, Paulsen, JS, PREDICT-HD Investigators And Coordinators Of The Huntington Study Group & Miedzybrodzka, ZH 2015, 'Performance of the 12-item WHODAS 2.0 in prodromal Huntington disease', EJHG : European journal of human genetics : the official journal of the European Society of Human Genetics. , vol. 23, no. 11, pp. 1584-1587. https://doi.org/10.1038/ejhg.2015.11
Kim, Ji-In ; Long, Jeffrey D ; Mills, James A ; Downing, Nancy ; Williams, Janet K ; Paulsen, Jane S ; PREDICT-HD Investigators And Coordinators Of The Huntington Study Group ; Miedzybrodzka, Zofia Helena. / Performance of the 12-item WHODAS 2.0 in prodromal Huntington disease. In: EJHG : European journal of human genetics : the official journal of the European Society of Human Genetics. . 2015 ; Vol. 23, No. 11. pp. 1584-1587.
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abstract = "The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 for routine clinical use. We tested the utility of the 12-item WHODAS 2.0 in prodromal Huntington disease. Using data from 726 participants and 630 companions over a 3-year follow-up, linear mixed models were fitted to test (1) baseline and longitudinal differences by progression group; (2) participant and companion differences within each group; and (3) sensitivity of the 12-item WHODAS in comparison to the 36-item WHODAS and the Total Functional Capacity (TFC) score from the Unified Huntington's Disease Rating Scale. Participants showed baseline group differences whereas companions showed baseline and longitudinal group differences. Companions reported worse functional decline over time than participants as the disease progresses. The 12-item WHODAS detected longitudinal change better than the 36-item WHODAS and the TFC in the medium progression group. Results suggest the 12-item WHODAS 2.0 can detect baseline and longitudinal differences in prodromal HD and may be useful in HD clinical trials.",
author = "Ji-In Kim and Long, {Jeffrey D} and Mills, {James A} and Nancy Downing and Williams, {Janet K} and Paulsen, {Jane S} and {PREDICT-HD Investigators And Coordinators Of The Huntington Study Group} and Miedzybrodzka, {Zofia Helena}",
note = "ACKNOWLEDGEMENTS We thank the PREDICT-HD sites, the study participants, the National Research Roster for Huntington Disease Patients and Families, the Huntington’s Disease Society of America and the Huntington Study Group. This publication was supported by the National Center for Advancing Translational Sciences, and the National Institutes of Health (NIH), through Grant 2 UL1 TR000442-06. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. This research is supported by the National Institutes of Health, National Institute of Neurological Disorders and Stroke (5R01NS040068) awarded to Dr Paulsen, CHDI Foundation, Inc (A3917) awarded to Dr Paulsen, Cognitive and Functional Brain Changes in Preclinical Huntington’s Disease (HD) (5R01NS054893) awarded to Dr Paulsen, 4D Shape Analysis for Modeling Spatiotemporal Change Trajectories in Huntington’s (1U01NS082086), Functional Connectivity in Premanifest Huntington’s Disease (1U01NS082083), and Basal Ganglia Shape Analysis and Circuitry in Huntington’s Disease (1U01NS082085).",
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N1 - ACKNOWLEDGEMENTS We thank the PREDICT-HD sites, the study participants, the National Research Roster for Huntington Disease Patients and Families, the Huntington’s Disease Society of America and the Huntington Study Group. This publication was supported by the National Center for Advancing Translational Sciences, and the National Institutes of Health (NIH), through Grant 2 UL1 TR000442-06. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. This research is supported by the National Institutes of Health, National Institute of Neurological Disorders and Stroke (5R01NS040068) awarded to Dr Paulsen, CHDI Foundation, Inc (A3917) awarded to Dr Paulsen, Cognitive and Functional Brain Changes in Preclinical Huntington’s Disease (HD) (5R01NS054893) awarded to Dr Paulsen, 4D Shape Analysis for Modeling Spatiotemporal Change Trajectories in Huntington’s (1U01NS082086), Functional Connectivity in Premanifest Huntington’s Disease (1U01NS082083), and Basal Ganglia Shape Analysis and Circuitry in Huntington’s Disease (1U01NS082085).

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N2 - The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 for routine clinical use. We tested the utility of the 12-item WHODAS 2.0 in prodromal Huntington disease. Using data from 726 participants and 630 companions over a 3-year follow-up, linear mixed models were fitted to test (1) baseline and longitudinal differences by progression group; (2) participant and companion differences within each group; and (3) sensitivity of the 12-item WHODAS in comparison to the 36-item WHODAS and the Total Functional Capacity (TFC) score from the Unified Huntington's Disease Rating Scale. Participants showed baseline group differences whereas companions showed baseline and longitudinal group differences. Companions reported worse functional decline over time than participants as the disease progresses. The 12-item WHODAS detected longitudinal change better than the 36-item WHODAS and the TFC in the medium progression group. Results suggest the 12-item WHODAS 2.0 can detect baseline and longitudinal differences in prodromal HD and may be useful in HD clinical trials.

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