Quality of life in Essential Tremor Questionnaire (QUEST): development and initial validation

BACKGROUND/OBJECTIVE: Essential tremor (ET) can diminish functioning and quality of life (QOL) but generic QOL measures may be relatively insensitive to ET and its therapies. We sought to develop an ET-specific measure that might be more sensitive, acceptable to patients, relatively brief, and easily used. DESIGN/METHODS: A sample of 200 patients (average age 70 years, range 30-91; average disease duration 15 years) rated the extent to which tremor impacts a function or state, tremor severity in various body parts, perceived health, and overall QOL. Responses to this initial questionnaire were subjected to principal components analysis (PCA). Inspection of factor coordinates, Eigenvalues, variance accounted for, and correlation matrices were used to select items for confirmatory PCA. Final scale reliability was assessed using Cronbach's alpha. Validity was evaluated by correlations between QOL scales and self-rated tremor severity. RESULTS: PCA of 65 initial items yielded 11 factors accounting for 71% of variance. Six factors were discarded. Two items were eliminated for not loading on a factor and 33 for perceived redundancy. Confirmatory PCA of the retained 30 items yielded an almost identical factor structure (six factors, 70% of variance accounted for, and similar item loadings). Because two factors had very few items loading on them, these two factors were combined into one scale. The final measure has five scales: Physical, Psychosocial, Communication, Hobbies/Leisure, and Work/Finance. Reliability was excellent for the whole instrument and four scales (> or =0.89), and good for the Work/Finance scale (0.79). Severity of voice and head tremor were the best correlates of Communication (0.70 and 0.35), while the Physical scale was related to right and left upper extremity tremor (0.59 and 0.56). Scales correlated more highly with patients' rating of their overall QOL than their health perception. CONCLUSIONS: A brief, 30-item, ET-specific QOL scale with excellent reliability was developed. Preliminary validity data are encouraging. The Quality of Life in Essential Tremor Questionnaire (QUEST) promises to facilitate QOL measurement in ET.