Development and Psychometric Properties of a New Brief, Yet Comprehensive, Behavioral Questionnaire for Huntington's Disease

Abstract

Background Individuals with Huntington's disease (HD) experience motoric, cognitive, and psychiatric dysfunction. These difficulties can cause maladaptive behaviors that can be very distressing to family and caregivers. Capturing these behaviors in clinical and research settings is crucial. Objectives To develop and evaluate the psychometric properties of an instrument that is brief, yet comprehensive, in assessing a broad range of behaviors in HD. Methods A pool of 30 items encompassing common behaviors in HD was generated. Items were scored on a 4‐point Likert scale ranging from completely disagree to completely agree, with higher scores indicating greater dysfunction. The self‐report measure was piloted on a small sample of individuals with HD. Reliability (test–retest, internal consistency) and validity (convergent, discriminant, criterion) were evaluated. Results The HD–Behavioral Questionnaire (HD‐BQ) demonstrated evidence for reliability with a test–retest correlation coefficient of r = 0.81 and an internal consistency of 0.96. Validity was established with evidence for good convergent, divergent, and criterion validity. A receiver operating characteristic curve showed that the HD‐BQ outperformed a similar commonly used measure in diagnostic capability of behaviors in HD. Conclusions The HD‐BQ, a patient self‐report measure, was created to more fully explore behavioral issues that people with HD experience in response to limitations of commonly used instruments in the field. Psychometric evidence supports that the HD‐BQ is a valid and reliable instrument for the brief, yet comprehensive, assessment of problematic behaviors in HD.