Most patients with indolent systemic mastocytosis (SM) do not feel their disease is well controlled, even though many clinicians believed it is, according to a study published recently in The Journal of Allergy and Clinical Immunology. Findings will be presented at the 2026 American Academy of Allergy, Asthma and Immunology Annual Meeting held February 27-March 2, 2026, in Philadelphia.
A new survey found a clear disconnect between how patients experienced their condition and how advanced practitioners assessed disease control. These findings suggest that improving communication, symptom tracking and shared decision-making could help align care with what patients actually live through each day.
The study was conducted by the Journal of the Advanced Practitioner in Oncology in collaboration with The Mast Cell Disease Society and the Advanced Practitioner Society of Hematology and Oncology.
Researchers analyzed survey responses from 53 patients with indolent SM and 50 advanced practitioners. Questions focused on the diagnostic journey, symptom patterns, care coordination, support systems and how patients rated their own disease control as well controlled, moderately controlled or not controlled.
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About half of patients, 50.9%, reported a diagnostic delay of eight years or longer. Despite ongoing care, only 25% of patients said their disease was well controlled.
Advanced practitioners saw things differently: 78% said the disease was well controlled in at least half of their patients.
“Bridging patient–clinician gaps requires improved dialogue, better tools for symptom tracking, and patient-informed metrics to align clinical assessment with patient experience,” stated the authors of this study.
Symptom type and frequency appear to play a major role in shaping patients’ sense of stability. More than half of advanced practitioners, 54%, reported difficulty tracking symptom severity and burden over time. Without reliable tools to measure day-to-day impact, important aspects of the patient experience may be missed during clinic visits.
For patients, these findings highlight the importance of speaking openly about symptoms and how they affect daily life. For clinicians, the results underscore the need for better symptom tracking tools and patient-informed measures of disease control. Closing this gap could help lead to care that not only looks controlled on paper but also feels controlled in real life.
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