Patient-reported outcomes among patients with systemic mastocytosis in routine clinical practice

The TouchStone SM Patient Survey (100 items) found that systemic mastocytosis (SM) patients (mean time since diagnosis, 6.7 years) reported substantial symptom burden and unmet needs because of SM. Over a 1-year recall, 30% of responders reported seeking emergency care for anaphylaxis, 52% used three or more prescription medication for SM, 54% reduced their work hours because of SM, and 64% avoided leaving home because of symptoms. A vast majority (93%) had experienced 10 or more SM-related symptoms, among which anaphylactic episodes and abdominal pain were the most bothersome.