The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Patient Clinical Experiences and Beyond

Publication date: Available online 8 August 2018

Source: The Journal of Allergy and Clinical Immunology: In Practice

Author(s): Nancy Russell, Susan Jennings, Blair Jennings, Valerie Slee, Lisa Sterling, Mariana Castells, Peter Valent, Cem Akin

Abstract

Background

Mast cell diseases such as mastocytosis and mast cell activation syndrome involve abnormal proliferation and/or activation of these cells leading to many clinically relevant symptoms.

Objective

In order to determine the characteristics and experiences of people known or suspected to have a mast cell disorder, The Mastocytosis Society, a US based patient advocacy, research and education organization, conducted a survey of patients.

Methods

This web-based survey was publicized through specialty clinics and the Society's newsletter, Web site and online blogs. Both online and paper copies of the questionnaire were provided together with required statements of consent.

Results

The first set of results from this survey of 420 respondents has been previously published; the second set is presented in this article. These results include source(s) of diagnosis, clinical and laboratory tests reported, comorbidities, dietary practices, possible familial occurrence of mast cell diseases, and perceptions concerning mast cell related medical care needs in the United States.

Conclusions

These patient survey results are provided to assist medical professionals in learning patients' perceptions of their experiences and to give patients with mast cell disorders and caregivers the opportunity to compare experiences with those of other affected individuals.