Bethany

Prolonged Disorders of Consciousness (PDOC), including Vegetative State and Minimally Conscious State lasting more than four weeks, affect children and youth. Researchers are evaluating the Music Therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA), a children's version of the adult Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC). This study aims to test the accuracy, reliability, and usefulness of MuSICCA in diagnosing and understanding awareness in children with PDOC, addressing a current lack of validated tools for this population. Participants aged 2 to 18 years suspected of having PDOC will undergo up to seven assessment sessions over a single involvement. These include four MuSICCA assessments, one Coma Recovery Scale - Revised (CRS-R), one Coma/Near Coma Scale (CNC), and one Nociception Coma Scale Revised (NCS-R) session. The MuSICCA protocol presents musical stimuli through visual, auditory, and tactile means, with participants responding to these stimuli and commands. Sessions will be recorded with audio-visual equipment, and physical responses will be documented to support diagnosis and treatment planning. The study will collect data over three years from sites in the UK, Ireland, the US, and other English-speaking countries. Researchers will analyze assessment scores and video recordings to measure MuSICCA’s reliability between different assessors and sessions. Families and clinicians will complete questionnaires to evaluate the clinical usefulness of MuSICCA. The main outcome measures include the Music Therapy Sensory Instrument for Cognition, Consciousness and Awareness scores after two weeks and the Coma Recovery Scale - Revised after one day. Data will be securely stored and analyzed by independent statisticians to ensure unbiased results.