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Development and validation of the mastocytosis activity score

机译：乳腺细胞增强活动分数的开发和验证

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摘要

Abstract Background Mastocytosis is a heterogeneous disease characterized by a clonal expansion of mast cells in various organs. The vast majority of patients suffer from signs and symptoms caused by mediator release from mast cells. Although the disease burden is high, there is currently no specific and validated instrument to measure and monitor signs and symptoms in patients with mastocytosis. Objective To develop and validate a disease‐specific tool to measure and monitor the activity of signs and symptoms in patients with mastocytosis, the Mastocytosis Activity Score (MAS). Methods Nineteen potential MAS items were developed in a combined approach consisting of semi‐structured patient interviews, expert input and literature research. Item selection was performed by impact analysis with 76 patients followed by a review for face validity. The resulting MAS was tested for validity, reliability and influence factors. In parallel, a US American English version of the MAS was developed. Results A total of 68 mastocytosis patients took part in the MAS validation study. The final 9‐item MAS was found to have a three‐domain structure (“skin,” “gastrointestinal tract” and “other”), a valid total score and an excellent test‐retest reliability. Multiple regression analysis revealed that disease duration, age or gender is not a significant determinant of the MAS results. Conclusions The MAS is a disease‐specific, valid and reliable patient‐reported outcome measure for adult patients with cutaneous and indolent systemic mastocytosis. It may serve as a valuable tool to measure and monitor mastocytosis activity, both, in clinical trials and in routine care.
机译：摘要背景乳细胞增长症是一种异质疾病，其特征在于各种器官中肥大细胞的克隆膨胀。绝大多数患者患有由桅杆细胞释放介质引起的症状和症状。虽然疾病负担很高，但目前没有具体和验证的仪器可以测量和监测乳细胞症患者的症状和症状。目的旨在开发和验证疾病特定的工具，以衡量和监测乳细胞症患者的症状和症状的活动，乳细胞诱导活动评分（MAS）。方法采用半结构患者访谈，专家投入和文学研究，开发了19个潜在的MAS项目。物品选择是通过影响76名患者的影响分析进行，然后进行审查对面部有效性。测试所得到的MAS进行有效性，可靠性和影响因素。并行，开发了美国美国英语版的MAS。结果共有68例乳腺癌患者参与了MAS验证研究。发现最终的9项MAS具有三域结构（“皮肤”，“胃肠道”和“其他”），有效的总分和优异的测试 - 保持性可靠性。多元回归分析表明，疾病持续时间，年龄或性别不是MAS结果的重要决定因素。结论MAS是针对皮肤和惰性全身乳细胞增多症的成人患者的疾病特异性，有效且可靠的患者报告的结果措施。它可以作为衡量和监测乳细胞增多活性，临床试验和常规护理的有价值的工具。

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  • 来源
    《Allergy》 |2018年第7期|共8页
  • 作者

    Siebenhaar F.; Sander B.; Ho L. H. T.; Ellrich A.; Maurer M.; Weller K.;

  • 作者单位

    Interdisciplinary Mastocytosis Center CharitéCharité ‐ Universit?tsmedizin BerlinBerlin Germany;

    Interdisciplinary Mastocytosis Center CharitéCharité ‐ Universit?tsmedizin BerlinBerlin Germany;

    Interdisciplinary Mastocytosis Center CharitéCharité ‐ Universit?tsmedizin BerlinBerlin Germany;

    Interdisciplinary Mastocytosis Center CharitéCharité ‐ Universit?tsmedizin BerlinBerlin Germany;

    Interdisciplinary Mastocytosis Center CharitéCharité ‐ Universit?tsmedizin BerlinBerlin Germany;

    Interdisciplinary Mastocytosis Center CharitéCharité ‐ Universit?tsmedizin BerlinBerlin Germany;

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  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类 医学免疫学;
  • 关键词

    disease activity; mastocytosis; patient‐reported outcome; questionnaire; symptoms;

    机译：疾病活动;乳细胞瘤化;患者报告的结果;问卷;症状;

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