Patient Point of View of the diagnosis, treatment and follow up in acromegaly: Single center study from a tertiary center

Objectives: We aimed to evaluate the awareness and perspectives of acromegaly patients in the diagnosis and treatment processes, as well as to evaluate basic clinical and demographic features. Methods A cross-sectional study was conducted at the Endocrinology Department of Yildirim Beyazit University between March 2019-April 2020. Fifty-eight acromegalic patients were enrolled. All patients were identified from our database and called for a clinical visit and fill the questionnaire forms. Results Fifty-eight patients were included in this study (41.4% female). The mean age of the patients was 52 ± 10.8. Median years from symptom to diagnosis (min-max) was 2 (1-12). 55.2% of the patients did not graduate from high school. Thirty of fifty-eight (51.7%) patients had knowledge about the etiology of their disease.While 12 patients (20.7%) noticed their initial symptoms themselves, 75% of the patients reported their symptoms during the clinical history taken by a health care professional. The majority of patients were diagnosed by an endocrinologist (69%). Acromegaly didn’t affect social life but affected work life and caused early retirement. Transsphenoidal surgery was performed as primary treatment in 96.6% of the patients (n=56). 46 patients (79.3%) received medical treatment with somatostatin receptor ligands (SSRL) (octreotide or lanreotide LAR) with or without cabergoline. Overall disease control was achieved in 38 patients (65.5%). Conclusions Acromegaly is usually detected incidentally by clinicians. The diagnosis of acromegaly is delayed in most patients and disease-related complications have already developed at the time of diagnosis. We think that increasing the awareness of the society and health care professionals will reduce both disease-related comorbidities and the economic burden on the health system.