Early-Phase Rehabilitation of Children and Adolescents with Chronic Disorders of Consciousness: Standardized, Ability-Based Registration of Remission (RemiPro) Supports Goal-Finding and Establishing a Prognosis

Background/Purpose: RemiPro (Remission profile for 2- to 18-year-old children and adolescents after severe acquired brain lesions) allows a standardized, comprehensive and valid documentation of remission trajectories and supports goal-finding for therapy. RemiPro shows trajectories of remission over weeks, months or years and monitors the children’s abilities while activities of daily living are either performed with them or they perform them themselves. It documents every-day performance, not therapeutic capacity. RemiPro comprises six level of remission, on the basis of familiar or newly acquired activities in the areas of (1) free play and leisure; (2) locomotion, communication, and self-care; (3) school, therapy, and tasks. Each level describes approximately 25 situations of participation/activities of daily living. The children’s abilities are documented for 1 week by observing the child and by questioning parents, nurses, and therapists. A software transfers the results into a “profile of abilities.” Documentation requires around 30 minutes for a child known to the therapist.

Methods: Since 2011, a total of 102 children and adolescents who experienced a period of nonresponsive wakefulness as a consequence of acute traumatic, hypoxic, or other affections of the brain and who were transferred to us for early-phase rehabilitation were documented by RemiPro.

Results and Conclusions: Using RemiPro indeed facilitated finding individual and appropriate goals for the patients (e.g., by revealing the next possible steps) and also communication within the therapeutic team. Analyzing individual remission trajectories in the context of all 102 trajectories gives valuable prognostic information.