The Prevalence of Acromegaly Is Higher Than Previously Reported

Changes Over a Three-Decade Period

Charlotte Aagaard; Amanda S. Christophersen; Susanne Finnerup; Christian Rosendal; Helga A. Gulisano; Kåre S. Ettrup; Peter Vestergaard; Jesper Karmisholt; Eigil Husted Nielsen; Jakob Dal


Clin Endocrinol. 2022;97(6):773-782. 

In This Article

Abstract and Introduction


Objective: To study time-related changes in the prevalence and patient characteristics of acromegaly, as well as to assess the impact of changes in treatment on disease control.

Methods: A total of 107 patients with acromegaly were identified by healthcare registries and subsequently validated by patient chart review over a three-decade period (1992–2021). A systematic literature review focusing on the incidence and prevalence of acromegaly was performed identifying 31 studies.

Results: The prevalence of acromegaly significantly increased throughout the study period (R 2 = 0.94, p < .001) and was 122 cases/106 persons in 2021 whereas the annual incidence remained constant at 4.6 cases/106 persons. The age at the first sign of acromegaly and the age at diagnosis significantly increased during the study period, whereas growth hormone and insulin-like growth factor I decreased. Incidentalomas constituted 32% of all cases diagnosed with acromegaly in the last decade. Primary surgery was used in 93% of all cases, and repeated surgery decreased from 24% to 10% during the three decades. The use of first-generation somatostatin analogues (21%–48%) and second-line medical treatment (4%–20%) increased with a concomitant improvement of biochemical disease control (58%–91%).

Conclusion: The prevalence of acromegaly is higher than previously reported and the clinical presentation has shifted towards a milder phenotype. Modern treatment of acromegaly enables individualized treatment and disease control in the majority of patients.


Acromegaly is a rare and systemic disease characterized by hypersecretion of growth hormone (GH) and insulin-like growth factor I (IGF-I).[1,2] Due to an insidious disease onset, a diagnostic delay of 5–10 years is common,[3,4] although, this period has been reported to be decreasing.[4] Classic signs of acromegaly include the growth of hands, feet, and facial changes, together with less specific symptoms like joint and muscular pain, excessive sweating, snoring, and headache.[5] Before the 1990s the prevalence of acromegaly was reported to be 40–60/106 persons,[6–8] however, in more recent reports the prevalence has increased to 70–90/106 persons.[1,9–14] This increase has been ascribed to improved disease awareness and more incidental findings due to increased use of cerebral computed tomography (CT) and magnetic resonance imaging (MRI) scans.[4,15] At the same time a shift towards a milder phenotype of acromegaly has been suggested.[4,15] The annual incidence of acromegaly, on the other hand, is more constantly reported to be 3–5 cases/106 individuals.[1,9,11,16]

During recent decades, several diagnostic improvements have evolved such as new imaging techniques, (MRI, PET), additional biochemistry (IGF-I), and more accurate GH assays. The treatment of acromegaly has gradually changed with the introduction of modern medical treatment modalities and the continuous development of increasingly advanced and refined surgery techniques. In Denmark, first-generation somatostatin analogues were introduced in the late 1990s, whereas GH receptor antagonist (GHRA), treatment followed in the early 2000s, and second-generation SSAs in the late 2000s. Such progress presumably allows a more individualized treatment with better chances of achieving biochemical disease control.[17,18]

The aim of this study was to investigate time-dependent changes in incidence, prevalence, and patient characteristics in acromegaly during a three-decade period (1992–2021) in the North Denmark Region (NDR). Furthermore, we aim to explore changes in treatment strategies and the effect of such changes on biochemical disease control.