Neuro-QoL health-related quality of life measurement system: Validation in Parkinson's disease

ABSTRACT Introduction Neuro‐QoL is a multidimensional patient‐reported outcome measurement system assessing aspects of physical, mental, and social health identified by neurology patients and caregivers as important. One of the first neurology‐specific patient‐reported outcome measure systems created using modern test development methods, Neuro‐Qol enables brief, yet precise, assessment and the ability to conduct both PD‐specific and cross‐disease comparisons. We present results of Neuro‐QoL clinical validation using a sample of PD patients. Methods A total of 120 PD patients recruited from academic medical centers were assessed at baseline, 1 week, and 6 months. Assessments included Neuro‐QoL and general and PD‐specific validity measures. Results Participants were 62% male and 95% white (average age = 66); H & Y stages were 1 (16%), 2 (61%), 3 (18%), and 4 (5%). Internal consistency and test‐retest reliability of Neuro‐QoL ranged from Cronbach's alphas = 0.81 to 0.94 with intraclass correlation coefficients = 0.66 to 0.80. Pearson's correlations between Neuro‐QoL and legacy measures were generally moderate and in expected directions. UPDRS Part 2 was moderately correlated with Neuro‐QoL Upper Extremity and Mobility, respectively (r's = −0.44; −0.59). Parkinson's Disease Questionnaire‐39 and Neuro‐QoL measures of similar constructs showed strong‐to‐moderate correlations (r's = 0.70–0.44). Neuro‐QoL measures of fatigue, mobility, positive emotion, and emotional/behavioral control showed responsiveness to self‐reported change. Conclusions Neuro‐QoL is valid for use in PD clinical research. Reliability for all but two measures is sufficient for group comparisons, with some evidence supporting responsiveness to change. Neuro‐QoL possesses characteristics, such as brevity, flexibility in administration, and suitability, for cross‐disease comparisons that may be advantageous to users in a variety of settings. © 2016 Movement Disorder Society