Patient Perceptions in Mast Cell Disorders - 15/07/18

Doi : 10.1016/j.iac.2018.04.006

Susan V. Jennings, PhD ^a,^⁎ , Valerie M. Slee, RN, BSN ^a, Rachel M. Zack, ScD, SM ^a, Srdan Verstovsek, MD, PhD ^b, Tracy I. George, MD ^c, Hongliang Shi, MS ^d, Philina Lee, PhD ^d, Mariana C. Castells, MD, PhD ^e
^a The Mastocytosis Society, Inc, PO Box 416, Sterling, MA 01564, USA
^b Department of Leukemia, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, TX 77030, USA
^c Department of Pathology, University of Utah, 15 N Medical Drive East, Suite 1100, Salt Lake City, Utah, 84112 USA
^d Blueprint Medicines Corporation, 45 Sidney Street, Cambridge, MA 02139, USA
^e 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

^∗Corresponding author.

Résumé

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.

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Keywords : Mast cell disorder, Mast cell activation, Patient perceptions and experiences, The Mastocytosis Society, Anaphylaxis, Quality of life, Support, Disability

Plan

Disclosure Statements: The Mastocytosis Society, Research Committee Chair (S.V. Jennings). The Mastocytosis Society, Chair, Board of Directors (V.M. Slee). The Mastocytosis Society, Research Committee Member (R.M. Zack). Medical Advisory Board for The Mastocytosis Society (S. Verstovsek). Medical Advisory Board for The Mastocytosis Society; consulting fees, Blueprint Medicines (T.I. George). H. Shi and P. Lee are employees and stockholders at Blueprint Medicines. Medical Advisory Board for The Mastocytosis Society (M.C. Castells). Blueprint Medicines provides funds to help fund the Mast Cell Connect registry, and provides funds to The Mastocytosis Society, Inc.

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Vol 38 - N° 3

P. 505-525 - août 2018 Retour au numéro

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Patient Perceptions in Mast Cell Disorders - 15/07/18

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