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

doi:10.1016/j.iac.2018.04.006

Patient Perceptions in Mast Cell Disorders

Immunol Allergy Clin North Am. 2018 Aug;38(3):505-525. doi: 10.1016/j.iac.2018.04.006.

Authors

Susan V Jennings¹, Valerie M Slee², Rachel M Zack², Srdan Verstovsek³, Tracy I George⁴, Hongliang Shi⁵, Philina Lee⁵, Mariana C Castells⁶

Affiliations

¹ The Mastocytosis Society, Inc, PO Box 416, Sterling, MA 01564, USA. Electronic address: susan.jennings@tmsforacure.org.
² The Mastocytosis Society, Inc, PO Box 416, Sterling, MA 01564, USA.
³ Department of Leukemia, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, TX 77030, USA.
⁴ Department of Pathology, University of Utah, 15 N Medical Drive East, Suite 1100, Salt Lake City, Utah, 84112 USA.
⁵ Blueprint Medicines Corporation, 45 Sidney Street, Cambridge, MA 02139, USA.
⁶ Department of Medicine, Division of Rheumatology, Immunology, and Allergy, Mastocytosis Center, Brigham and Women's Hospital, Harvard Medical School, 60 Fenwood Road, Boston, MA 02115, USA.

PMID: 30007467
DOI: 10.1016/j.iac.2018.04.006

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.

Publication types

Research Support, Non-U.S. Gov't
Review

MeSH terms

Emotions
Government Regulation
Humans
Mast Cells / physiology*
Mastocytosis / epidemiology*
Mastocytosis / psychology
Patient Preference*
Patient Reported Outcome Measures*
Perception*
Physician-Patient Relations
Quality of Life
United States
United States Food and Drug Administration