Mitchell Braun, Ilona J Frieden, Dawn H Siegel, Elizabeth George, Christopher P Hess, Christine K Fox, Sarah L Chamlin, Beth A Drolet, Denise Metry, Elena Pope, Julie Powell, Kristen Holland, Caden Ulschmid, Marilyn G Liang, Kelly K Barry, Tina Ho, Chantal Cotter, Eulalia Baselga, David Bosquez, Surabhi Neerendranath Jain, Jordan K Bui, Irene Lara-Corrales, Tracy Funk, Alison Small, Wenelia Baghoomian, Albert C Yan, James R Treat, Griffin Stockton Hogrogian, Charles Huang, Anita Haggstrom, Mary List, Catherine C McCuaig, Victoria Barrio, Anthony J Mancini, Leslie P Lawley, Kerrie Grunnet-Satcher, Kimberly A Horii, Brandon Newell, Amy Nopper, Maria C Garzon, Margaret E Scollan, Erin F Mathes
OBJECTIVE: To characterize long-term outcomes of PHACE syndrome. STUDY DESIGN: Multicenter study with cross-sectional interviews and chart review of individuals with definite PHACE syndrome ≥10 years of age. Data from charts were collected across multiple PHACE-related topics. Data not available in charts were collected from patients directly. Likert scales were used to assess the impact of specific findings. Patient-Reported Outcomes Measurement Information System (PROMIS) scales were used to assess quality of life domains...
April 2024: Journal of Pediatrics