PsoriSol Clinic for Dermatology, Hersbruck/Nuremberg.
J Dtsch Dermatol Ges. 2011 Jul;9(7):525-32. doi: 10.1111/j.1610-0387.2011.07638.x. Epub 2011 Mar 24.
The quality and impact of care in patients with mastocytosis has not yet been investigated in detail.
Here, we report monocentric findings of a retrospective questionnaire from 84 adult inpatients with mastocytosis regarding the quality and impact of pre-inpatient clinical care after a period of inpatient stay. It was possible to analyse the data derived from 50 patients (40 female, 10 male; 74 % with systemic mastocytosis, 26 % with cutaneous mastocytosis).
Correct diagnoses were discovered to have taken over 2 years for 68 % of patients (up to 11 years). 58 % of patients required the consultation of three or more clinicians until the final diagnosis was reached; 3 patients consulted more than 9 doctors. The correct diagnosis was finally made in 94 % of patients by a dermatologist. The main symptoms expressed by the patients were skin disorders (92 %), itching (66 %) and exhaustion (48 %). From a patient perspective, the main triggering factors given were food and food additives (63 %), emotional stress (46 %) and physical exertion (44 %). Interdisciplinary inpatient treatment provided the patients with a better understanding of their disease in 90 %. Outpatient supervision was performed mainly by dermatologists (46 %), family doctors (40 %) and other clinicians (14 %). 22 % required the assistance of various doctors for their outpatient care. Only 14 % of patients reported that their daily life was relatively unaffected by mastocytosis. 22 % felt the disease slightly affected their quality of life, 20 % moderately, 26 % strongly and 18 % said the disease had a very strong impact on their quality of life. 82 % of patients browsed the Internet in order to find information regarding mastocytosis, although for 26 % this information was not deemed useful and 10 % felt rather unsettled.
Patients with severe mastocytosis requiring hospitalization reported clear restrictions in their daily life. Such patients require an improved interdisciplinary diagnostic approach and therapy.
肥大细胞增多症患者的护理质量和效果尚未得到详细研究。
在这里，我们报告了一项回顾性问卷调查的中心发现，该调查涉及 84 名成年住院肥大细胞增多症患者，调查了住院期间住院前临床护理的质量和影响。我们能够分析来自 50 名患者（40 名女性，10 名男性；74%为系统性肥大细胞增多症，26%为皮肤肥大细胞增多症）的数据。
68%的患者发现正确的诊断需要超过 2 年（最长达 11 年）。58%的患者需要咨询三位或更多的临床医生才能得出最终诊断；有 3 名患者咨询了超过 9 位医生。最终，94%的患者由皮肤科医生做出正确诊断。患者主要表达的症状为皮肤疾病（92%）、瘙痒（66%）和疲劳（48%）。从患者的角度来看，主要的诱发因素是食物和食物添加剂（63%）、情绪压力（46%）和体力消耗（44%）。90%的患者认为接受多学科住院治疗使他们更好地了解自己的疾病。主要由皮肤科医生（46%）、家庭医生（40%）和其他临床医生（14%）对患者进行门诊监督。22%的患者需要不同医生的协助进行门诊治疗。只有 14%的患者表示他们的日常生活受肥大细胞增多症影响较小。22%的患者感觉疾病对生活质量有轻微影响，20%的患者感觉有中度影响，26%的患者感觉有强烈影响，18%的患者感觉疾病对生活质量有非常强烈的影响。82%的患者浏览互联网以获取有关肥大细胞增多症的信息，尽管 26%的患者认为这些信息没有用，10%的患者感到不安。
需要住院治疗的严重肥大细胞增多症患者报告称日常生活受到明显限制。这些患者需要改进多学科诊断方法和治疗。
