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Rating scales and performance-based measures for assessment of functional ability in Huntington's disease: critique and recommendations

Mestre, T. A., Busse, M., Davis, A. M., Quinn, L., Rodrigues, F. B., Burgunder, J.-M., Carlozzi, N. E., Walker, F., Ho, A. K., Sampaio, C., Goetz, C. G., Cubo, E., Martinez-Martin, P. and Stebbins, G. T. (2018) Rating scales and performance-based measures for assessment of functional ability in Huntington's disease: critique and recommendations. Movement Disorders Clinical Practice, 5 (4). pp. 361-371. ISSN 2330-1619

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To link to this item DOI: 10.1002/mdc3.12617

Abstract/Summary

Limitation of functional ability is a major feature of Huntington’s disease (HD). The International Parkinson and Movement Disorder Society (MDS) commissioned the appraisal of the use and clinimetric properties of clinical measures of functional ability that have been applied in HD studies and trials to date, to make recommendations regarding their use based on standardized criteria. After a systematic literature search, we included a total of 29 clinical measures grouped into two categories: 1) performance based measures (e.g., balance, walking, reaching/grasping), and 2) rating scales. Three performance-based measures are rated as “recommended”: the Tinetti Mobility Test for screening of fall risk and for severity assessment of mobility in patients with manifest HD (up to stage III); the Berg Balance Scale for severity of balance impairment; and the Six-Minute Walk Test for assessment of walking endurance (severity) in HD subjects with preserved ambulation. No rating scale targeting functional ability reached a “recommended” status, either for screening or severity measurement. The main challenges identified in this review include applying widely accepted conceptual frameworks to the identified measures, the lack of validation of clinical measures to detect change over time, and absence of validated measures for upper limb function. Furthermore, measures of capacity or ability to perform activities of daily living had ceiling effects in people with early and pre-manifest HD. We recommend that the MDS prioritize the development of new scales that capture small but meaningful changes in function over time for outcome assessment in clinical trials, particularly in earlier stages of HD.

Item Type:Article
Refereed:Yes
Divisions:Interdisciplinary centres and themes > Centre for Literacy and Multilingualism (CeLM)
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Psychopathology and Affective Neuroscience
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Nutrition and Health
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Perception and Action
ID Code:75096
Publisher:Wiley

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