The Impact of Delayed Diagnosis on Quality of Life in Patients with Mast Cell Activation Syndrome
DOI:
https://doi.org/10.58445/rars.3193Keywords:
Mast Cell Activation Syndrome, neuroinflammation, depression, anxiety, cognitive dysfunctionAbstract
Abstract–Mast Cell Activation Syndrome (MCAS) is a complex disorder characterized by recurrent episodes of multisystem symptoms due to inappropriate mast cell mediator release. Patients frequently face prolonged diagnostic delays, often spanning years, as symptoms mimic those of other chronic conditions. The impact of such delays on patient quality of life remains underexplored. This study aims to evaluate the relationship between delayed diagnosis and patient-reported quality of life outcomes in MCAS. Using data collected from patient-reported surveys distributed through The Mast Cell Disease Society, we analyzed diagnostic timelines, comorbidities, and validated quality of life indicators, including physical health, mental health, fatigue, pain, sleep disturbance, and cognitive functioning. Patients were stratified into early (<2 years from symptom onset) and late (≥2 years) diagnosis groups. Preliminary findings suggest that patients with delayed diagnosis report poorer outcomes across physical, emotional, and cognitive domains, with increased fatigue, pain interference, and brain fog compared to those diagnosed earlier. These results underscore the clinical and psychosocial burden of diagnostic delay in MCAS and highlight the urgent need for improved awareness, timely recognition, and earlier intervention strategies.
References
References
Afrin, L. B., Butterfield, J. H., Raithel, M., & Molderings, G. J. (2017). Characterization of mast cell activation syndrome. The American Journal of the Medical Sciences, 353(3), 207–215. https://doi.org/10.1016/j.amjms.2016.12.013
Jennings, S., Russell, N., Jennings, B., Slee, V. M., Sterling, L., Castells, M., & Akin, C. (2014). The Mastocytosis Society survey on mast cell disorders: Patient experiences and perceptions. Journal of Allergy and Clinical Immunology: In Practice, 2(1), 70–76. https://doi.org/10.1016/j.jaip.2013.09.004
Jennings, S., Slee, V. M., Finnerty, C. C., Hempstead, J. B., & Bowman, A. S. (2021). Symptoms of mast cell activation: The patient perspective. Annals of Allergy, Asthma & Immunology, 127(4), 407–409. https://doi.org/10.1016/j.anai.2021.07.004
Miller, C. S., & Palmer, R. F. (2021). Mast cell activation may explain many cases of chemical intolerance. Environmental Sciences Europe, 33(1), 129. https://doi.org/10.1186/s12302-021-00570-3
Weinstock, L. B., Pace, L. A., Rezaie, A., Afrin, L. B., & Molderings, G. J. (2021). Mast cell activation syndrome: A primer for the gastroenterologist. Digestive Diseases and Sciences, 66(4), 965–982. https://doi.org/10.1007/s10620-020-06264-9
The Mast Cell Disease Society, Inc. (2019). Mast Cell Activation Syndrome patient survey (AAAAI 2019 poster abstract). Journal of Allergy and Clinical Immunology, 143(2 Suppl), AB427. https://doi.org/10.1016/j.jaci.2018.12.128
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