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, Jean-Marc; Carlozzi, N. E.; Walker, F.; Ho, A. K.; Sampaio, C.; Goetz, C. G.; Cubo, E.; Martinez-Martin, P.; 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. 361-372. Wiley 10.1002/mdc3.12617

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Department of Head Organs and Neurology (DKNS) > Clinic of Neurology

UniBE Contributor:

Burgunder, Jean-Marc

Subjects:

600 Technology > 610 Medicine & health

ISSN:

2330-1619

Publisher:

Wiley

Language:

English

Submitter:

Panagiota Milona

Date Deposited:

26 Mar 2019 08:27

Last Modified:

05 Nov 2019 00:21

Publisher DOI:

10.1002/mdc3.12617

PubMed ID:

30363510

Uncontrolled Keywords:

Huntington's disease performance measures physical function rating scales

BORIS DOI:

10.7892/boris.124741

URI:

https://boris.unibe.ch/id/eprint/124741

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