O041 / #504: PICU OUTCOMES: A QUALITATIVE STUDY OF TEEN AND FAMILY PRIORITIES PICU OUTCOMES: A QUALITATIVE STUDY OF TEEN AND FAMILY PRIORITIES

Aims & Objectives: AIMS & OBJECTIVES: Outcomes choices in clinical research studies are mostly decided by researchers. Scant evidence exists regarding outcomes important to families to address in research programs. As part of the development of a Core Outcome Set (COS) for pediatric critical care medicine research programs, we sought input from families to explore outcomes important to them.

Methods: METHODS: We conducted telephone interviews with parents and teenagers who survived a critical illness and had a pediatric intensive care unit (PICU) length of stay > 48 hours. Participants were recruited using purposeful sampling based on leading PICU diagnoses from seven centers in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network.

Results: RESULTS: Twenty-six (26) parents and five teenagers (average age=15 years) participated representing 12 diagnoses (Table). Average age of parent’s child at discharge was 5.7 years and at time of interview was 8.6 years. Outcomes that parents and children were most often concerned with differed. Parents felt that the family and child’s quality of life including family’s emotional health, post discharge adjustments to employment and household schedules, and understanding and planning for the future possibilities for their child were important outcomes. Outcomes for teenagers centered on post discharge adjustments to school, hobbies, friendships and their new physical limitations.

Conclusions: CONCLUSIONS: Our study shows that outcomes reported by families offer important insights for the development of a COS and may improve the implications of research findings and care of critically ill children and their families.