Development for the Teen-Aged Life Impact Burn Recovery Evaluation (TA-LIBRE12-19) Profile.

Advances in clinical burn management have led to emphasis on using assessments in clinics. Outcome measures are important to assess the effectiveness of interventions, and support integration back into the community. A more granular measure with advanced psychometrics capability using computer adaptive tests (CAT)) is needed. The current study developed a conceptual model as the first step in creating a new measurement tool for teen burn survivors aged 12 to 19 years, inclusively. To identify outcomes important in assessment of burn recovery, focus groups of clinicians, teens, and their parents were conducted until thematic saturation was reached. Each focus group transcript was analyzed using deductive and inductive approaches to identify and categorize content. Findings were used to validate the model and ensure adequate domain coverage. The TA-LIBRE12-19 conceptual model includes Activity (Mobility, Physical Self-care, General Tasks, Experience of Self, and Learning and Applying Knowledge) and Participation (Major Life Areas, Interpersonal Interactions and Relationships, and Engagement). Eighteen participants completed the study. Clinician's median age was 47 years, (90% female and 80% white); teens' median age was 14 years (62% female and 75% white). Burn size ranged from 0.25 - 60% total body surface area. Focus group content was coded a total of 1,138 times during the analysis. Outcome areas most impacted include Experience of Self, Interpersonal Interactions and Relationships, and Symptoms (372, 282, and 112 codes respectively). A well informed credible conceptual model was developed with a solid foundation of domains consisting of Activity and Participation.