Lifetime Disability-adjusted Life Year assessment of indolent systemic mastocytosis.

in The journal of allergy and clinical immunology. In practice by M Mounié, H Derumeaux Burel, L Molinier, N Costa, C Bulai Livideanu

TLDR

  • The study estimates the Disability-adjusted Life Year (DALY) of Indolent Systemic Mastocytosis (ISM) and finds that it has a significant burden on patients and society.
  • The DALY of ISM is comparable to that of lymphoma, leukemia, and psoriasis, highlighting the importance of prioritizing research and addressing the disease burden.

Abstract

Indolent Systemic Mastocytosis (ISM) is a rare disease associated with numerous and diverse symptoms that significantly impact patients' overall health, psychological, emotional, and professional well-being, ultimately affecting their quality of life. We aim to estimate the Disability-adjusted Life Year (DALY) of ISM to assess the burden for patients and society. We used prospective and retrospective data on symptoms and quality of life from an ISM population recruited at the French expert center CEREMAST, to estimate Disability Weight allowing DALY calculation. An agent-based model was developed to more accurately assess the DALY of ISM over lifetime. Prospective data were available for 168 ISM patients. A wide variety of symptoms were assessed, with 12.7 (±5.9) symptoms per patient and huge impact on the quality of life. However, the emotional dimension and the impact on social life were also affected. Finally, we estimated the DALY per patient to be between 4.56 and 8.79, representing 89 to 168 per 100,000 inhabitants. The DALY of ISM is comparable to that of lymphoma, leukemia, and psoriasis. This is the first study to focus on the DALY of ISM. Despite the differences in disease characteristics (such as prevalence, mortality, and age at diagnosis), DALY allows for the ranking of conditions and provides a better understanding of the disease burden. These data may help research prioritization by offering valuable information to healthcare policymakers.

Overview

  • The study aims to estimate the Disability-adjusted Life Year (DALY) of Indolent Systemic Mastocytosis (ISM) to assess the burden for patients and society.
  • The study used prospective and retrospective data on symptoms and quality of life from an ISM population recruited at the French expert center CEREMAST to estimate Disability Weight and DALY calculation.
  • The primary objective is to evaluate the quality of life and disease burden of ISM patients, which can help prioritize research and inform healthcare policymakers.

Comparative Analysis & Findings

  • The study estimates that the DALY per patient is between 4.56 and 8.79, representing 89 to 168 per 100,000 inhabitants.
  • The findings suggest that the DALY of ISM is comparable to that of lymphoma, leukemia, and psoriasis.
  • The study highlights the significant impact of ISM on patients' quality of life, with 12.7 symptoms per patient and a huge impact on quality of life.

Implications and Future Directions

  • The study's findings can help healthcare policymakers prioritize research and allocate resources to address the disease burden of ISM.
  • Future studies can build on this research to explore the long-term effects of ISM on patients and develop more effective treatment options.
  • The study's agent-based model can be used to estimate the DALY of other rare diseases, allowing for a better understanding of their disease burden.
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