Functional Rating Scale 2.0 (FuRST 2.0): A patient-reported outcome measure of function for Huntington's disease

Rebecca Lm Fuller; Pua Feigenbaum; Nancy LaPelle; Swati Sathe; Prachi Dalal; Jatin G Vaidya; Neha Sinha; Matthew Roché; Cheryl J Fitzer-Attas; Cristina Sampaio; Glenn T Stebbins

doi:10.1177/18796397251323549

Back

Functional Rating Scale 2.0 (FuRST 2.0): A patient-reported outcome measure of function for Huntington's disease

Journal article

Open access

Peer reviewed

Functional Rating Scale 2.0 (FuRST 2.0): A patient-reported outcome measure of function for Huntington's disease

Rebecca Lm Fuller, Pua Feigenbaum, Nancy LaPelle, Swati Sathe, Prachi Dalal, Jatin G Vaidya, Neha Sinha, Matthew Roché, Cheryl J Fitzer-Attas, Cristina Sampaio, …

Journal of Huntington's disease, Vol.14(2), pp.171-178

05/2025

DOI: 10.1177/18796397251323549

PMCID: PMC12231842

PMID: 40232155

Files and links (1)

url

https://doi.org/10.1177/18796397251323549View

Published (Version of record) Open Access

Abstract

BackgroundCurrent functional rating scales are not sensitive to the earliest functional changes in Huntington's disease (HD).ObjectiveThe Functional Rating Scale 2.0 (FuRST 2.0) is a patient-reported outcome (PRO) measure designed to be sensitive to the initial functional changes in HD, specifically stage 2 and mild stage 3, as defined by the Huntington's Disease Integrated Staging System (HD-ISS).MethodsWe followed standard assessment development methodology to create a PRO. Study 1 consisted of a Delphi panel which analyzed data from focus groups comprised of people with HD and companions from 6 countries. This was followed by four rounds of cognitive interviews through which we evaluated respondents' comprehension of the instructions, understanding of question and response options, and comfort with the material. Informal advice from a regulatory agency was garnered throughout the process.ResultsConcerns from the target population and regulators regarding instructions, questions, response options, and comfort with the material were addressed through modifications to the scale's wording and format.ConclusionsWe developed the FuRST 2.0 official working document (OWD), the penultimate version of the scale, using focus groups, a Delphi panel, iterative rounds of cognitive interviewing, and informal regulatory advice. Its psychometric properties are being evaluated in the FOCUS-HD validation studies from which the final version of the scale will be derived. The FuRST 2.0 OWD is available for use.

cognitive interview

focus group

function

Delphi panel

patient-reported outcome

qualitative research

Huntington's disease

Details

Title: Subtitle: Functional Rating Scale 2.0 (FuRST 2.0): A patient-reported outcome measure of function for Huntington's disease
Creators: Rebecca Lm Fuller - CHDI Foundation
Pua Feigenbaum - CHDI Foundation
Nancy LaPelle - Qualitative Research and Evaluation Consulting, Westborough, MA, USA
Swati Sathe - CHDI Foundation
Prachi Dalal - CHDI Foundation
Jatin G Vaidya - University of Iowa
Neha Sinha - CHDI Foundation
Matthew Roché - CHDI Foundation
Cheryl J Fitzer-Attas - ClinMed LLC, Monroe Township, NJ, USA
Cristina Sampaio - CHDI Foundation
Glenn T Stebbins - Rush University Medical Center
Resource Type: Journal article
Publication Details: Journal of Huntington's disease, Vol.14(2), pp.171-178
DOI: 10.1177/18796397251323549
PMID: 40232155
PMCID: PMC12231842
NLM abbreviation: J Huntingtons Dis
ISSN: 1879-6397
eISSN: 1879-6400
Publisher: SAGE PUBLICATIONS INC; THOUSAND OAKS
Grant note: CHDI Management/CHDI Foundation
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the CHDI Management/CHDI Foundation.
Language: English
Electronic publication date: 04/15/2025
Date published: 05/2025
Academic Unit: Psychiatry; Iowa Neuroscience Institute; University College Courses
Record Identifier: 9984811207402771

Metrics

6 Record Views

3 Times Cited - Web of Science