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HD-PRO-TRIAD
Availability
Please visit this website for more information about the instrument: HD-PRO-TRIAD
Classification
Supplemental: Huntington's Disease (HD)
Short Description of Instrument
The HD-PRO-TRIAD is a 47-item patient-reported measure that assesses health related quality of life (HRQOL) in HD patients across three symptom domains: cognitive decline, emotional/behavioral dyscontrol and motor function. This instrument is designed for use in both clinical research and practice.
Comments/Special Instructions
This measure is publicly available (it is included as an appendix in Tremor Other Hyperkinet Mov, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990832/pdf/tre-04-223-5131-1.pdf) it can be downloaded directly using that link.
Scoring and Psychometric Properties
Scoring: The cognition decline and emotional/dyscontrol domains contain 14 items. The motor function domain contains 19 items. Items are scored on a scale of 1 to 5. The total score is the sum of the calculated domain scores with a range of 3 to 15. Higher scores indicate worse HRQOL.
 
Psychometric Properties:
Initial validation study, Carlozzi et al., 2014, demonstrated reliability and validity:
    • Excellent internal consistency for all domains and overall (HD and caregiver participants' Cronbach's alpha values =0.94)

    • Strong correlation shown with other measures of the same domains

    • Intra-class correlation for patient self-report and caregiver proxy report for all domains and overall had correlation coefficient =0.92

Boileau et al., 2017 replicated and expanded upon the initial study findings:
    • Excellent internal consistency (Cronbach's alpha values >0.93)

    • Convergent and discriminant validity demonstrated through correlation with other measures

    • Differentiation between disease stages demonstrated known groups validity

    • Responsiveness to change over time at 12 and 24 months
Rationale/Justification
Strengths: The HD-PRO-TRIAD uses existing items from other, well established measurement systems (Neuro-QoL Emotional and Behavioral Dyscontrol, Neuro-QoL Cognition and TBI-QOL Cognition, and HDQLIFE Chorea) to generate composite scores, and a total score. There is data to support reliability (internal consistency) and validity (convergent/discriminant) from two independent samples; as well as published data on proxy/patient correlations, known-groups validity and responsiveness to change over time from a single sample.  
 
Weaknesses: The overall measure, which includes 47-items, is long relative to other existing health-related quality of life measures.  In addition, test-retest reliability has not yet been established.
References
Key References:
Victorson D, Carlozzi NE, Frank S, Beaumont JL, Cheng W, Gorin B, Duh MS, Samuelson D, Tulsky D, Gutierrez S, Nowinski CJ, Mueller A, Shen V, Sung V. Identifying Motor, Emotional-Behavioral, and Cognitive Deficits that Comprise the Triad of HD Symptoms from Patient, Caregiver, and Provider Perspectives. Tremor Other Hyperkinet Mov (N Y). 2014 Apr 14;4:224.
 
Carlozzi NE, Victorson D, Sung V, Beaumont JL, Cheng W, Gorin B, Duh MS, Samuelson D, Tulsky D, Gutierrez S, Nowinski CJ, Mueller A, Shen V, Frank S. HD-PRO-TRIAD™ Validation: A Patient-reported Instrument for the Symptom Triad of Huntington's Disease. Tremor Other Hyperkinet Mov (N Y). 2014 Apr 14;4:223.
 
Additional Reference(s):
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-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington's Disease. J Huntingtons Dis. 2017;6(3):201-215.
 
Document last updated August 2023