The study is a single, cross-sectional cognitive interview of FuRST 2.0, functional rating scale, administered to forty Huntington's Disease Gene Expansion Carriers (HDGECs) and potentially, their companions (the companion's participation is optional in this study). The scale will be tested as a patient reported outcome (PRO) in that the information will come directly from the HDGEC participant or the HDGEC participant together with his/her companion through self-report. The purpose is to identify real or potential comprehension or usage problems with scale items, response options, instructions and disclaimer statement, which are all components of the FuRST 2.0 scale. Through a structured cognitive interview with the HDGEC participants or the HDGEC participants together with their companions, followed by qualitative analysis, the final phrasing of the individual scale items, response options, instructions and disclaimer statement for the scale will be generated. Depending on the results of this study, an additional round of cognitive pre-testing may be required in a separate study.
Study Type
OBSERVATIONAL
Enrollment
52
Round 2 of cognitive pre-testing for a new functional rating scale
Rocky Mountain Movement Disorders Center, P.C.
Englewood, Colorado, United States
Hereditary Neurological Disease Centre, Inc.
Wichita, Kansas, United States
Columbia University
New York, New York, United States
Centre for Movement Disorders (Neuropharm Consulting)
Toronto, Ontario, Canada
Participant's comprehension of the FuRST 2.0 rating scale measured by qualitative analysis.
The primary assessment will use qualitative analysis of the cognitive interview to determine the usability of the FuRST 2.0 scale in the HD population. Note: The instructions, items, response options and disclaimer statement are all part of the FuRST 2.0 scale.
Time frame: 7 months
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