Changing Understanding of the Epidemiology and Early Mortality Risk of Acromegaly

Abstract Epidemiologic research for rare diseases such as acromegaly is challenging due to low prevalence, heterogeneous data sources, and regional variability. Here we review recent epidemiologic studies and provide a synthesis of the changing landscape of acromegaly and an overview of mortality rates and their determinants. Over the past few decades, the reported incidence and prevalence of acromegaly have increased, likely due to improved diagnostic tools, earlier diagnosis, and more efficient management of the disease leading to increased life expectancy. Available data suggest that the delay in diagnosis of acromegaly has progressively declined, and there is now a considerable increase in the rate of biochemical control—achieved in up to 90% of patients in some centers. This progress reflects improvements in disease management with the expanding use of multimodal and personalized treatment strategies. Consequently, mortality rates have substantially declined, approaching that of the general population. Despite these advances, most patients continue to be diagnosed only after acromegaly complications have developed. Comorbidities still have an independent and adverse effect on mortality and morbidity. Therefore, improved management of comorbidities is the optimal goal in the overall treatment of patients with acromegaly.