The Validated Mastocytosis Control Test for Measuring Disease Control
Due to the heterogeneous nature of clinical characteristics and the requirement for a multidisciplinary approach, diagnosing mastocytosis is challenging.1,2 Following diagnosis, patients should be monitored to track progress and treatment response, focusing on symptom burden, disease control, and the extent of impairment of quality of life.3 There are assessment tools that can be used to assess quality of life and systemic mastocytosis-specific symptoms; however, until recently, there was not a validated mastocytosis-specific patient-reported outcome measure designed to assess disease control. The Mastocytosis Control Test was designed using a combination approach of patient interviews, a literature review, and expert input, and then tested for reliability and validity.4 There were 10 patients participating in the item generation phase and 101 patients in the validation phase. The final Mastocytosis Control Test included 5 items, including symptom severity, onset of symptoms, emotional control, impairment of daily life, and control by treatment. Receiver operating characteristics analysis suggested that the use of a cutoff of 13 points could be used to identify patients with good disease control. According to Siebenhaar and colleagues, the Mastocytosis Control Test can be used both in daily practice and in clinical trials for monitoring and measuring disease control in adult patients with nonadvanced systemic mastocytosis.4 Notably, in a toolkit for systemic mastocytosis developed by the Advanced Practitioner Society for Hematology and Oncology, the Mastocytosis Control Test has been included as a tool for measuring systemic mastocytosis-related symptoms.5 References
- Pyatilova P, Siebenhaar F. measuring symptom severity and quality of life in mastocytosis. Immunol Allergy Clin North Am. 2023;43(4):751-762. doi:10.1016/j.iac.2023.04.003.
- Brockow K, Metcalfe DD. Mastocytosis. Chem Immunol Allergy. 2010;95:110-124. doi:10.1159/000315946.
- Pyatilova P, Akin C, Alvarez-Twose I, et al. Refined treatment response criteria for indolent systemic mastocytosis proposed by the ECNM-AIM consortium. J Allergy Clin Immunol Pract. 2022;10(8):2015-2024. doi:10.1016/j.jaip.2022.05.037.
- Siebenhaar F, Sofi S, Neisinger S, et al. The Mastocytosis Control Test: a patient-reported outcome measure assessing disease control. J Allergy Clin Immunol Pract. 2025;13(3):647-657.e3. doi: 10.1016/j.jaip.2024.11.021.
- Advanced Practitioner Society for Hematology and Oncology. Toolkit for Systemic Mastocytosis. https://www.apsho.org/page/apsho-aptoolkit-sm. Accessed June 5, 2025.
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