Measuring behavioural disturbances exhibited by children and adolescents in post-traumatic amnesia: Development of a scale

Abstract

Behavioural disturbances are often observed, but (to our knowledge) not systematically assessed, in children who are in post-traumatic amnesia (PTA) following traumatic brain injury (TBI). Therefore, we aimed to develop a prototype scale that measures the full range of behavioural disturbances exhibited by school-aged children in PTA. Quantitative and qualitative feedback was collected via online surveys. First, experts (n = 7) evaluated the relevance and developmental appropriateness of 37 behavioural items, extracted from the scoping literature review. Second, clinicians (n = 20) evaluated the preliminary scale for its suitability (acceptability, feasibility and usability). Analyses included descriptive statistics and qualitative analyses. First, experts eliminated nine items, adjusted the wording of three retained items and categorised 18 of the remaining 28 items into one of eight categories. Ten items were not consistently categorised. All experts highlighted that the scale needed to be short and easy to administer. Hence, categorised items were bundled, arriving at an 18-item preliminary scale. Second, clinicians deemed the preliminary scale highly suitable, easy to implement and addressing a gap in current clinical practice. The layout of the scale and wording of three items was modified according to qualitative feedback, arriving at an 18-item prototype. To our knowledge, this is the first scale designed to assess the full range of behavioural disturbances in children in PTA. The scale has the potential to systematically assess behaviour and streamline documentation of behavioural recovery in this population, inform management and rehabilitation, track responses to interventions and facilitate discussion with affected families.