Development and Clinical Validation of a New Item Bank and Short Form of Emotional and Behavioral Dyscontrol for Major Neurological Disorders : Results from the Neuro-QOL Study

Neurological disorders such as stroke, Parkinson’s disease (PD), traumatic brain injury, or multiple sclerosis (MS) can result in significant dyscontrol in one’s emotional and behavioral operations. There is a lack of adequate patient reported outcomes measures (PROs) to effectively assess these changes. Herein we present the development and initial psychometric evidence of a new PRO of emotional and behavioral dyscontrol (EBD), which is a part of a larger NINDS-sponsored measurement initiative called Neuro-QOL. We conducted this study in two which involved a comprehensive literature search, patient and professional input, development of an initial item pool, cognitive interviews, and field testing across major neurological disorders (n=511). Item response theory analyses yielded an 18-item unidimensional bank (slopes from 1.77 to 3.95). Using clinical, conceptual and psychometric criteria, we selected an 8-item short form that contained items with high information function and discrimination across the continuum of mild, moderate and severe. We tested this short form and other external correlate measures in a multi-site clinical validation study (n=581) in stroke, PD, MS, amyotrophic lateral sclerosis (ALS) and epilepsy. Across conditions, the EBD short form demonstrated high internal consistency (alpha = .89 -.93), test-retest reliability (intra class correlation = 74-.84) and construct validity (e.g., convergent and known groups). Responsiveness to change over time was observed in MS and epilepsy cohorts, but not in other groups. This new measurement tool can help advance our understanding of the impact of EBD in neurological disorders and help inform the comparative effectiveness of psychological, behavioral and pharmacologic interventions.