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

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/10(6) persons in 2021 whereas the annual incidence remained constant at 4.6 cases/10(6) 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.