Patient Perceptions in Mast Cell Disorders
Susan V Jennings, Valerie M Slee, Rachel M Zack, Srdan Verstovsek, Tracy I George, Hongliang Shi, Philina Lee, Mariana C Castells, Susan V Jennings, Valerie M Slee, Rachel M Zack, Srdan Verstovsek, Tracy I George, Hongliang Shi, Philina Lee, Mariana C Castells
Abstract
Understanding experiences, perceptions, and perspectives of patients with a mast cell disorder (MCD), including cutaneous mastocytosis, systemic mastocytosis, mast cell activation syndromes, and hereditary α-tryptasemia, is an important aspect of successful care, treatment, and informed development of novel therapies. This article reviews existing studies and presents new data on MCD patient perceptions regarding medical care, symptoms, allergies/sensitivities, triggers, future health/disease progression, treatment, impact on daily living, quality of life, support needs, and concerns regarding possible familial disease. Discussion includes aspects affecting the MCD community that require further consideration and development.
Keywords: Anaphylaxis; Disability; Mast cell activation; Mast cell disorder; Patient perceptions and experiences; Quality of life; Support; The Mastocytosis Society.
Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.
Source: PubMed