ASH 2020 | Results from the TouchStone survey of systemic mastocytosis patients and their healthcare providers

Ruben Mesa, MD, UT Health San Antonio MD Anderson Cancer Center, San Antonio, TX, discusses the findings of the TouchStone survey of systemic mastocytosis patients and their healthcare providers. Systemic mastocytosis is a rare mast cell neoplasm, often accompanied by a severe symptom burden caused by characteristic KIT receptor constitutive activation. With the ultimate goal of optimizing care for these patients, the TouchStone SM survey investigated healthcare provider (HCPs) perceptions and management approaches of patient symptoms, as well as patient-reported outcomes. HCPs of different specialties, including allergists, immunologists, and oncologists consistently reported the same treatment goals: improved symptoms and quality of life in non-advanced disease, and improved survival and quality of life in advanced disease. The perceived prevalence of KIT mutations and time from the start of symptoms to diagnosis were reported as much lower than previously published data. Improved HCP awareness of symptoms may aid more rapid diagnosis. When patient-reported outcomes in a real-world treatment setting were surveyed, the impact of their disease on numerous outcomes was significant. Below average health and mental wellbeing were recorded, as well as significant symptom burden, negatively impacted quality of life, work impairments, and frequent physician appointments. Overall, the TouchStone survey highlighted a significant unmet need in these patients, necessitating investigation into novel therapeutics and improved diagnosis. This interview took place during the 62nd American Society of Hematology (ASH) Annual Meeting and Exposition, 2020.