The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Patient Clinical Experiences and Beyond.
Adolescent
Adult
Aged
Aged, 80 and over
Allergists
Anaphylaxis
/ diagnosis
Bone Density
Bone Density Conservation Agents
/ therapeutic use
Bone Diseases, Metabolic
/ drug therapy
Calcium
/ therapeutic use
Child
Child, Preschool
Clinical Laboratory Techniques
Dermatologists
Diet
Diet Therapy
Family
Female
Genetic Testing
Health Behavior
Humans
Infant
Male
Mastocytosis
/ diagnosis
Mastocytosis, Cutaneous
/ diagnosis
Mastocytosis, Systemic
/ diagnosis
Middle Aged
Needs Assessment
Oncologists
Osteoporosis
/ drug therapy
Physicians, Primary Care
Surveys and Questionnaires
United States
Vitamin D
/ therapeutic use
Young Adult
Allergist
Clinical laboratory tests
Dermatologist
Diet
Family occurrence
Hematologist
Mast cell activation syndrome
Mast cell disorders
Survey
The Mastocytosis Society
Journal
The journal of allergy and clinical immunology. In practice
ISSN: 2213-2201
Titre abrégé: J Allergy Clin Immunol Pract
Pays: United States
ID NLM: 101597220
Informations de publication
Date de publication:
04 2019
04 2019
Historique:
received:
20
07
2017
revised:
07
06
2018
accepted:
12
07
2018
pubmed:
12
8
2018
medline:
25
7
2020
entrez:
12
8
2018
Statut:
ppublish
Résumé
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. 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. 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. 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 disorders, and perceptions concerning mast cell disorder-related medical care needs in the United States. 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.
Sections du résumé
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
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 disorders, and perceptions concerning mast cell disorder-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.
Identifiants
pubmed: 30098409
pii: S2213-2198(18)30469-0
doi: 10.1016/j.jaip.2018.07.032
pii:
doi:
Substances chimiques
Bone Density Conservation Agents
0
Vitamin D
1406-16-2
Calcium
SY7Q814VUP
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1157-1165.e6Informations de copyright
Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.