The prevalence of acromegaly is higher than previously reported: Changes over a three-decade period

Abstract

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 (R² = 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.

Keywords: acromegaly; growth hormone; pituitary adenoma; pituitary endocrinology.

Figure 1

Mean prevalence of acromegaly per 10⁶ persons (A) and annual incidence rate of acromegaly per 10⁶ persons over calendar time with standard deviations (B). R ², R‐squared.

Figure 2

Treatment of acromegaly in the period 1992–2021. The bars indicate the percentage of patients commencing a type of treatment at a given decade. Treatment modalities incudes; Primary surgery, repeated surgery, first‐line medical therapy including first‐generation SSAs, second‐ and third‐line therapy including GHRAs and second‐generation SSA, DAs and radiotherapy. DAs, Dopamine agonists; GHRAs, growth hormone receptor antagonists; SSA, somatostatin analogues.

Figure 3

Changes in biochemical disease control after 3–5 years of at follow‐up. Data presented as decades according to the year at diagnosis and at last follow‐up for all prevalent cases in year 2021. Controlled disease was defined as IGF‐I × ULN ≤ 1.2 or normalization of GH_fasting or GH_nadir. according to the respective assay used. IGF‐I, insulin‐like growth factor I; ULN, Upper Limit of Normal.