Endocrine Abstracts (2006) 11 P510

AcroBel: a registry and survey on acromegaly in Belgium

M Bex1, R Abs2, G T’Sjoen3, J Mockel4, B Velkeniers5 & D Maiter6

1UZLeuven, Leuven, Belgium; 2UZA, Antwerp, Belgium; 3UZGent, Ghent, Belgium; 4ULB Erasme, Brussels, Belgium; 5AZ VUB, Brussels, Belgium; 6UCL St. Luc, Brussels, Belgium.

To evaluate the epidemiology and global quality of care of acromegaly in Belgium, all endocrinologists treating patients with acromegaly were invited to participate in a nationwide survey extending from 15-6-2003 till 30-9-2004, aiming to include all patients (including deaths) that were in follow up or newly diagnosed after 1-1-2000. The project was ethically approved and written informed consent obtained. Retrospective data on demographics, pathology, complications and treatment were anonymously collected through Palms and stored in an Access-based database. A symptom score and the ACRO-Qol questionnaire were used to evaluate current quality of life. The level of hormonal control was determined by central measurements of serum GH, IGF-I and IGFBP-3.

The participation of 64 physicians working in 37 centres provided a ‘real life’ picture of acromegaly. Of the 419 patients (51% men) in the dataset, 80% were followed in 12 university or large regional hospitals (9–65 patients each), the care of the remaining 20% was dispersed over 25 hospitals (1–6 patients each).

There were 96 new cases of acromegaly reported, giving a global incidence of 2 cases per million inhabitants (c.p.m.) per year. The prevalence was globally 41 c.p.m. but varied between 21 and 61 c.p.m. among the different areas. Mean age at diagnosis was 42±13 y in male and 48±14 y in female patients, with a mean follow up of 12±9 y (range 0–45). Twenty-seven deaths were reported at a mean age of 65±14 y in men and 70±12 y in women. Central lab assays were available in 316 patients (75%). Mean GH was <2 μg/l in 65% of patients (excluding 11 on GH replacement therapy and 4 on pegvisomant) while 56% had an IGF-I Z-score <+2.

Conclusion: Despite the available treatment modalities (pre-pegvisomant era), less than 60% of patients with acromegaly in Belgium are cured or controlled according to currently admitted criteria.

Acknowledgement: This AcroBel survey was made possible with the generous support of Novartis Belgium.

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