Maureen E Lyon, Jamie L Fraser, Jessica D Thompkins, Heidi Clark, Nicola Brodie, Kathryn Detwiler, Clarivet Torres, Michael F Guerrera, Tamiko Younge, Samar Aoun, Eduardo A Trujillo Rivera
BACKGROUND AND OBJECTIVE: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life. METHODS: A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions: (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric Next Steps: Respecting Choices pACP...
May 3, 2024: Pediatrics