Jennings Susan V, Slee Valerie M, Zack Rachel M, Verstovsek Srdan, George Tracy I, Shi Hongliang, Lee Philina, Castells Mariana C
The Mastocytosis Society, Inc, PO Box 416, Sterling, MA 01564, USA.
The Mastocytosis Society, Inc, PO Box 416, Sterling, MA 01564, USA.
Immunol Allergy Clin North Am. 2018 Aug;38(3):505-525. doi: 10.1016/j.iac.2018.04.006.
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.
了解肥大细胞疾病（MCD）患者的经历、认知和观点，包括皮肤肥大细胞增多症、系统性肥大细胞增多症、肥大细胞活化综合征和遗传性α-色氨酸血症，是成功护理、治疗以及合理开发新疗法的重要方面。本文回顾了现有研究，并呈现了关于MCD患者对医疗护理、症状、过敏/敏感、触发因素、未来健康/疾病进展、治疗、对日常生活的影响、生活质量、支持需求以及对可能的家族性疾病的担忧等方面的新数据。讨论内容包括影响MCD群体且需要进一步考虑和发展的方面。
