1 Development of the School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE: 5–12) Profile: A Conceptual Model Framework

Abstract

Abstract Introduction Pediatric burn injuries can alter the trajectory of the survivor’s entire life. Patient-centered outcome measures are helpful to capture and assess their unique physical and psychosocial needs and long-term recovery. This study aimed to develop a conceptual model framework to measure outcomes most important to pediatric burn survivors aged 5 to 12 years as a part of the SA-LIBRE5-12 Computer Adaptive Test (CAT) development. Methods This study used a systematic literature review guided by the WHO International Classification of Functioning – Child and Youth. Previously established domains in the American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire5-18 further guided framework development. Individual interviews with parents and clinicians were conducted to obtain perspectives on domains most important to assess following a burn injury in children aged 5 to 12 years. One clinician focus group was completed to identify gaps in the preliminary framework, and semi-weekly expert consensus meetings were conducted to solidify the framework. Qualitative data were analyzed by grounded theory methodology in NVivo 12 software. Results The literature review identified 82 articles. Eight parents and seven clinicians participated in individual interviews, four clinicians participated in one focus group, and three consultants were included in the expert consensus meetings. The consultants included a burn surgeon, psychiatrist, and health services researcher. Three major domains emerged from the grounded theory approach, including: 1) Physical Functioning: fine motor and upper extremity, gross motor and lower extremity, pain, skin sensitivity, sleep and fatigue, and physical resilience; 2) Psychological Functioning: cognitive, behavioral, emotional, resilience, and body image; and 3) Family and Social Functioning: school, peer relations, community participation, family relationships, and parental satisfaction. Conclusions The comprehensive literature review, clinician and parent individual interviews, clinician focus group, and expert consensus meetings resulted in a conceptual model framework for parent-reported health outcomes after a burn injury in school-aged children aged 5 to 12 years. The framework will be used to develop item banks for a CAT-based assessment of school-aged children’s health and developmental outcomes.