Evaluation of the DALY on a Cohort of Patients With Indolent Systemic Mastocytosis

Study Overview
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Brief Summary
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Mastocytosis is a group of pathologies characterized by the accumulation and/or clonal proliferation of abnormal mast cells in various organs. The impact of mastocytosis on health, quality of life, the psychoaffective sphere and on professional life constitutes the burden of this disease. The DALY is the disability-adjusted life expectancy, which takes into account the life expectancy and the number of years lost due to illness, disability or early death. Due to the major impact of the disease this study evaluates the DALY in indolent mastocytosis patients

Detailed Description
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Mastocytosis is a group of pathologies characterized by the accumulation and/or clonal proliferation of abnormal mast cells in various organs. Mastocytosis is a rare disease with an estimated prevalence of between 1/20,000 and 1/40,000. The impact of mastocytosis on health, quality of life, the psychoaffective sphere and on professional life constitutes the burden of this disease. This is probably important but very little studied so far. The DALY is the disability-adjusted life expectancy. It is calculated by subtracting from life expectancy the number of years lost due to illness, disability or early death. Ignorance of the disease and diagnostic error cause significant distress in patients. In our clinical experience, the impact of the disease on the personal, social, and professional life of our patients is major. It therefore seems important to better specify the impact on the quality of life and the costs of this pathology. The main objective of this study is to evaluate the DALY in indolent mastocytosis patients from the CEREMAST reference center of the Toulouse University Hospital.

Official Title
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Evaluation of the Disability-Adjusted Life Year (DALY) on a Cohort of Patients With Indolent Systemic Mastocytosis (ISM)

Conditions
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Mastocytosis, Indolent Systemic

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Having expressed their non opposition to participate in this study Diagnosed with indolent mastocytosis and cared for in the CEREMAST reference center in Toulouse Exclusion Criteria: Patient with a form of mastocytosis other than MSI Patient under legal protection, guardianship or curatorship

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Patients with indolent systemic mastocytosis (IMS)<br>Patients with IMS, included in the CEREMAST registry and who have given their consent to participate | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| DALY | DALY (Disability Adjusted Life Year): Its calculation consists of subtracting from life expectancy the number of years lost due to illness, disability or early death. | Day 1 | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of life based on the MC QOL scale | The quality of life of the included patients will be described with the The Mastocytosis Quality of Life Questionnaire (MC-QoL) which has scores from 0 to 100, where higher scores indicate higher health-related quality-of-life impairment | Day 1 | 
| Frequency of symptoms | The frequency of various symptoms of mast cell activation will also be described. | Day 1 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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DALY, Mastocytosis, Quality of life