13Jan 2024
Multicenter Study of Long-term Outcomes and Quality of Life in PHACE Syndrome after Age 10

Multicenter Study of Long-term Outcomes and Quality of Life in PHACE Syndrome after Age 10

A multicenter study assessed long-term outcomes of PHACE Syndrome in individuals ≥10 years old. Of 153 contacted, 68% participated. Results revealed that 94.1% had infantile hemangioma (IH) residua, with half receiving laser treatment; 89.5% were satisfied with the outcomes. Neurocognitive issues were common (headaches, learning differences), and 39.4% needed individualized education plans. Cerebrovascular arteriopathy was present in 91.3%, with progression in 29.4%. While ischemic stroke was low (1.9%), PHACE syndrome showed mild to severe morbidities. Primary and speciality follow-up care is crucial for long-term management.

  • #pediatrics

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