Assessing quality of life in patients with mastocytosis: development of the disease-specific questionnaire

INTRODUCTION: 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. AIM: To develop a questionnaire measuring the quality of life in patients with mastocytosis, and including the issues and symptoms typical for this group. MATERIAL AND METHODS: The study involved 85 patients (57 women and 28 men) suffering from mastocytosis. RESULTS: 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. CONCLUSIONS: 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.