Accepted for publication (PostPrint)
Journal of Huntington's Disease
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.
Boileau, Nicholas R; Stout, Julie C; Paulsen, Janes S; Cella, David; McCormack, Michael K; Nance, Martha A; Frank, Samuel; Lai, Jin-Shei; and Carlozzi, Noelle E, "Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington's Disease." (2017). School of Osteopathic Medicine Faculty Scholarship. 145.
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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