Spolak-Bobryk Natalia, Niedoszytko Marek, Jassem Ewa, Chełmińska Marta, Lange Magdalena, Majkowicz Mikołaj, Nedoszytko Bogusław, Borchet Judyta
Department of Allergology, Medical University of Gdansk, Gdansk, Poland.
Department of Dermatology, Venereology and Allergology, Medical University of Gdansk, Gdansk, Poland.
Postepy Dermatol Alergol. 2021 Dec;38(6):1044-1051. doi: 10.5114/ada.2021.108435. Epub 2022 Jan 11.
Appropriate and targeted psychological care, as well as psychoeducation covering the disease causes, symptoms, and their management are crucial elements of the therapeutic process in patients with mastocytosis. This care is based on the identification of problematic areas that are of the greatest importance for patients. The quality of life questionnaires available in Poland are designed for the general population; therefore, they do not encompass the specificity of difficulties experienced by people suffering from mastocytosis.
To develop a questionnaire measuring the quality of life in patients with mastocytosis, and including the issues and symptoms typical for this group.
The study involved 85 patients (57 women and 28 men) suffering from mastocytosis.
The analyses revealed that the Quality of Life in Mastocytosis Scale (QLMS) is a reliable and valid tool for measuring the quality of life, and it takes into account the specific difficulties experienced by patients with mastocytosis. Apart from the measurement of the global quality of life, QLMS offers a deeper assessment of the quality of patient's lives, including the difficulties in professional life, everyday life, leisure time, or those associated with protective behaviours.
The presented questionnaire completes a gap in quality-of-life studies by allowing to plan psychoeducation and offering a tool for a precise diagnosis of the quality of life in patients with mastocytosis.
适当且有针对性的心理护理，以及涵盖疾病病因、症状及其管理的心理教育，是肥大细胞增多症患者治疗过程的关键要素。这种护理基于对患者最重要的问题领域的识别。波兰现有的生活质量问卷是为普通人群设计的；因此，它们并未涵盖肥大细胞增多症患者所经历困难的特殊性。
编制一份测量肥大细胞增多症患者生活质量的问卷，并纳入该群体典型的问题和症状。
该研究纳入了85例肥大细胞增多症患者（57名女性和28名男性）。
分析表明，肥大细胞增多症生活质量量表（QLMS）是一种可靠且有效的生活质量测量工具，它考虑到了肥大细胞增多症患者所经历的特定困难。除了测量总体生活质量外，QLMS还能更深入地评估患者的生活质量，包括职业生活、日常生活、休闲时间方面的困难，或与保护行为相关的困难。
所呈现的问卷填补了生活质量研究的空白，有助于规划心理教育，并为精确诊断肥大细胞增多症患者的生活质量提供了一种工具。
