Long-term outcome in patients with acromegaly: analysis of 1344 patients from the German Acromegaly Register

Abstract

Background: Acromegaly is a rare disease with significant morbidity and increased mortality. Epidemiological data about therapeutic outcome under 'real life' conditions are scarce. Objective: To describe biochemical long-term outcome of acromegaly patients in Germany. Design and methods: Retrospective data analysis from 1344 patients followed in 42 centers of the German Acromegaly Register. Patients' data were collected 8.6 (range 0-52.6) years after diagnosis. Controlled disease was defined by an IGF1 within the center-specific reference range. Results: Nine hundred and seventeen patients showed a normalized IGF1 (157 (range 25-443) ng/ml). In patients with a diagnosis dated back O2 years (nZ1013), IGF1 was normalized in 76.9%. Of the patients, 19.5% had an elevated IGF1 and a random GH R1 ng/ml, 89% of the patients had at least one surgical intervention, 22% underwent radiotherapy, and 43% received medical treatment. After surgery 38.8% of the patients were controlled without any further therapy. The control rates were higher in surgical centers with a higher caseload (PZ0.034). Of the patients with adjunctive radiotherapy 34.8% had a normal IGF1 8.86 (0-44.9) years post irradiation, 65.2% of the medically treated patients were controlled, and 47.2% of the patients with an elevated IGF1 received no medical therapy. Conclusion: The majority of acromegaly patients were controlled according to their IGF1 status. Longterm outcome could be improved by exploiting medical treatment options especially in patients who are not controlled by surgery and/or radiotherapy.

Dawkowanie i koszt lanreotydu Autogel 120 mg stosowanego w leczeniu akromegalii w Polsce — wyniki 2-letniego badania Lanro-Study

“…Third, the study population, from 35 centres in different Polish regions, represents a wide cross-section of acromegalic patients in our country. About 80% of patients with a documented tumour size had a macroadenoma at diagnosis indicating that the analysed cohort was representative for the disease [13][14][15][16][17][18][19][20][21][22][23]. In the current analysis the prevalence of acromegaly in women is higher than in other registries [13][14][15][16][17][18][19][20][21][22][23], but the female predominance is in accordance with literature.…”

“…The percentage of patients treated previously with surgery is in the range of that reported from the Spanish and German registry (81% and 89%, respectively) [14,21], but higher than those reported from the Belgian cohort (68%) [16] or the UK National Acromegaly Register (68.7%) [20]. In the present cohort, irradiation had been applied in 17% of cases.…”

60 YEARS OF NEUROENDOCRINOLOGY: Acromegaly

“…1), 75-94% of the cases are controlled according to current criteria (Biermasz et al 2004, Abbassioun et al 2006, Schofl et al 2013). Disease control is associated with significant improvement of the symptomatology (Swearingen et al 1998, Beauregard et al 2003 and QoL (Caron et al 2014).…”

“…Although the surgical results have overall improved in the last decades (Bates et al 2008), the experience of the surgeon is still essential for surgical cure (Bates et al 2008, Schofl et al 2013. In older series, disease remission using milder criteria (defined as normal IGF1 and/or nadir GH below 2 mg/l) was achieved in 61% of cases overall (88% for microadenomas) (Freda et al 1998b).…”

“…When using current biochemical remission criteria (see below), the best reported rates for micro-and macroadenomas were 81-100% and 45-68% respectively (Ludecke & Abe 2006, Jane et al 2011, Sun et al 2014. In a large study based on the German ACM Registry, reflecting the integrated results obtained by different centers, the overall rate of IGF1 normalization by surgery alone was only 38.8% (Schofl et al 2013).…”