TY  - JOUR
AV  - restricted
Y1  - 2018/07//
EP  - 372
TI  - Rating Scales and Performance?based Measures for Assessment of Functional Ability in Huntington's Disease Critique and Recommendations
KW  - Huntington?s disease
KW  -  physical function
KW  -  performance measures
KW  -  rating scales
N2  - 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, and 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.
ID  - discovery10049808
IS  - 4
N1  - This version is the author accepted manuscript. For information on re-use, please refer to the publisher?s terms and conditions.
VL  - 5
SP  - 361
A1  - Mestre, T
A1  - Busse, M
A1  - Davis, AM
A1  - Quinn, L
A1  - Brogueira Rodrigues, FA
A1  - Burgunder, J-M
A1  - Carlozzi, NE
A1  - Walker, F
A1  - Ho, AK
A1  - Sampaio, C
A1  - Goetz, CG
A1  - Cubo, E
A1  - Martinez-Martin, P
A1  - Stebbins, GT
A1  - Members of the MDS Committee on Rating Scales Development, .
JF  - Movement Disorders Clinical Practice
UR  - https://doi.org/10.1002/mdc3.12617
SN  - 2330-1619
ER  -