Patients with indolent SM have quality of life comparable to that of some cancers

ISM's symptom burden is heavy.

Patients with indolent systemic mastocytosis (SM) have a quality of life comparable to that of patients with lymphoma and leukemia, according to a study published recently in JACI in Practice.

The study assessed quality of life according to the Disability-Adjusted Life Year (DALY) metric and found that the symptom burden of ISM was comparable to that of patients with leukemia and lymphoma. The study underscored the importance of prioritizing health interventions that improve the quality of life in patients with indolent SM, study authors said.

Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.

“The diagnostic challenges associated with numerous and diverse symptoms have a substantial impact on individuals’ overall health, as well as their psycho-affective and professional lives, ultimately affecting their quality of life,” the authors said. “However, this burden is rarely thoroughly investigated.”

Read more about SM signs and symptoms

The authors aimed to assess indolent SM’s burden in the population using the DALY scale, a metric used to estimate the effect of mortality and morbidity into a single measure by adding the Years of Life Lost (YLL) due to premature mortality and the Years Lived with Disability (YLD) due to disease or injury.

The authors analyzed data from 168 patients with a confirmed indolent SM diagnosis. On average, the diagnostic process of the included population lasted 10 years. Each patient had 12 symptoms. Symptoms range from mild to moderate abdominal pain and dermatological symptoms to severe fractures and anaphylactic reactions.

The authors noted that although some symptoms were manageable, the combination of them led to significant limitations on daily life activities. 

The DALY was 89-169 per 100,000. This result means that, on average, every 100,000 individuals in a population lose 80 to 169 years of healthy life due to indolent SM. A DALY between 89 to 169 per 100,000 persons is comparable to that of leukemia (138) and lymphoma (180).

“Disease burden data helps guide research prioritization by bringing valuable information to healthcare policymakers,” the authors said. “Due to its polymorphic nature, the variety of symptoms, and diagnostic delays, assessing the economic consequences of the ISM may be of great interest and will constitute the following part of this work.”

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