Indolent systemic mastocytosis (ISM) appears to significantly affect activities of daily living (AoDL) in over 50% of patients, according to a recently published abstract in Annals of Allergy, Asthma, and Immunology.
In a survey that included 40 patients with a confirmed indolent SM diagnosis according to the World Health Organization (WHO) 2016 criteria, approximately half of respondents reported daily symptoms that had a significant impact on their quality of life. Furthermore, nearly 50% reported that their symptoms had worsened moderately or severely after their diagnosis.
“Indolent systemic mastocytosis (ISM) is the most common subtype of SM; additional information is needed to understand the diagnostic journey, symptom severity, impact on quality of life and work/activities, and healthcare utilization,” the authors wrote.
Learn more about SM signs and symptoms
In this context, the word indolent reflects that, unlike other forms of SM, patients have an average life expectancy. However, patients still experience symptoms related to mast cell activation.
The survey used several clinically validated measures, such as the ISM Symptom Assessment Form (ISM-SAF) and the total symptom score (TSS) derived from it, to assess respondents’ disease burden and quality of life.
Over 40% of patients reported that their diagnostic process lasted over two years and required over six visits. The TSS results suggest moderate to severe disease in a significant percentage of patients. The TSS score considers the presence of symptoms such as itching, diarrhea, nausea, and flushing, among others. Patients with severe symptoms appeared to have predominantly gastrointestinal and skin symptoms.
The author observed that symptomatic treatment appeared only to have a moderate effect on patients. Statistical analysis showed that TSS scores seemed to have a marked correlation with disease impact in the workspace.
“SM was self-reported as a burdensome condition in half the patients which markedly affected daily living,” the authors wrote.
