Document Type

Article

Version Deposited

Accepted for publication (PostPrint)

Publication Date

1-1-2017

Publication Title

Journal of Huntington's Disease

DOI

10.3233/JHD-170238

Abstract

BACKGROUND: Huntington's disease (HD), is a neurodegenerative disorder that is associated with cognitive, behavioral, and motor impairments that diminish health related quality of life (HRQOL). The HD-PRO-TRIADTM is a quality of life measure that assesses health concerns specific to individuals with HD. Preliminary psychometric characterization was limited to a convenience sample of HD participants who completed measures at home so clinician-ratings were unavailable.

OBJECTIVES: The current study evaluates the reliability and validity of the HD-PRO-TRIADTM in a well-characterized sample of individuals with HD.

METHODS: Four-hundred and eighty-two individuals with HD (n = 192 prodromal, n = 193 early, and n = 97 late) completed the HD-PRO-TRIADTM questionnaire. Clinician-rated assessments from the Unified Huntington Disease Rating Scales, the short Problem Behaviors Assessment, and three generic measures of HRQOL (WHODAS 2.0, RAND-12, and EQ-5D) were also examined.

RESULTS: Internal reliability for all domains and the total HD-PRO-TRIADTM was excellent (all Cronbach's α >0.93). Convergent and discriminant validity were supported by significant associations between the HD-PRO-TRIADTM domains, and other patient reported outcome measures as well as clinician-rated measures. Known groups validity was supported as the HD-PRO-TRIADTM differentiated between stages of the disease. Floor and ceiling effects were generally within acceptable limits. There were small effect sizes for 12-month change over time and moderate effect sizes for 24-month change over time.

CONCLUSIONS: Findings support excellent internal reliability, convergent and discriminant validity, known groups validity, and responsiveness to change over time. The current study supports the clinical efficacy of the HD-PRO-TRIADTM. Future research is needed to assess the test-retest reliability of this measure.

Comments

The final publication is available at IOS Press through http://dx.doi.org/10.3233/JHD-170238

Published Citation

Boileau NR, Stout JC, Paulsen JS, Cella D, McCormack MK, Nance MA, Frank S, Lai JS, Carlozzi NE. Reliability and validity of the HD-PRO-Triad TM, a health-related quality of life measure designed to assess the symptom triad of Huntington's disease. Journal of Huntington’s Disease. 2017 Sep 29;6(3):201-215. doi: 10.3233/JHD-170238. PMID: 28968239. PMCID: PMC6089522.

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