Ilonka Kreitschmann-Andermahr1,2, Sonja Siegel3,4, Bernadette Kleist3, Johannes Kohlmann4, Daniel Starz4, Rolf Buslei5, Maria Koltowska-Häggström6, Christian J Strasburger7, Michael Buchfelder4. 1. Department of Neurosurgery, University of Duisburg-Essen, Hufelandstr. 55, 45147, Essen, Germany. ilonka.kreitschmann@uk-essen.de. 2. Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany. ilonka.kreitschmann@uk-essen.de. 3. Department of Neurosurgery, University of Duisburg-Essen, Hufelandstr. 55, 45147, Essen, Germany. 4. Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany. 5. Institute of Neuropathology, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany. 6. Department of Women's and Children's Health, Uppsala University, Akademiska Sjukhuset, 751 85, Uppsala, Sweden. 7. Department of Endocrinology, Diabetes and Nutritional Medicine, Charité Universitaetsmedizin, Campus Charité Mitte, Charitéplatz 1, 10117, Berlin, Germany.
Abstract
PURPOSE: Early diagnosis is a success factor for the prevention of long-term comorbidity and premature death in patients with acromegaly, but large-scale data on the diagnostic process and disease management are scarce. Therefore, we aimed to evaluate the diagnostic process, implementation of treatment and changes in life situation in patients with acromegaly, focusing on sex-specific differences. METHODS: Non-interventional patient-reported outcome study. 165 patients with clinically and biochemically proven acromegaly were questioned about the diagnostic process and utilization of health care by means of a self-developed standardized postal survey including questions on acromegaly symptoms experienced before diagnosis, number and specialty of consulted doctors, time to diagnosis and aftercare. RESULTS: The diagnostic process took 2.9 (SD 4.53) years, during which 3.4 (SD 2.99) physicians were consulted. Women waited longer [4.1 (SD 5.53) years] than men [1.6 (SD 2.69) years; p = 0.001] for the correct diagnosis, and consulted more doctors in the process [4.0 (SD 2.99) vs. 2.7 (SD 2.84) doctors, p < 0.001, respectively]. In 48.5 % of patients, acromegaly was diagnosed by an endocrinologist (men: 45.1 %; women: 52.4 %). Overall disease duration from symptom onset until last surgery was 5.5 (SD 6.85) years, with no sex differences. A change in employment status was the most commonly reported event after diagnosis and a quarter of the patients stated that the illness had changed their lives. CONCLUSIONS: Our findings confirm the urgent need to increase awareness of the clinical manifestation of acromegaly to facilitate an earlier diagnosis of the disease and to provide diagnostic equality across the sexes.
PURPOSE: Early diagnosis is a success factor for the prevention of long-term comorbidity and premature death in patients with acromegaly, but large-scale data on the diagnostic process and disease management are scarce. Therefore, we aimed to evaluate the diagnostic process, implementation of treatment and changes in life situation in patients with acromegaly, focusing on sex-specific differences. METHODS: Non-interventional patient-reported outcome study. 165 patients with clinically and biochemically proven acromegaly were questioned about the diagnostic process and utilization of health care by means of a self-developed standardized postal survey including questions on acromegaly symptoms experienced before diagnosis, number and specialty of consulted doctors, time to diagnosis and aftercare. RESULTS: The diagnostic process took 2.9 (SD 4.53) years, during which 3.4 (SD 2.99) physicians were consulted. Women waited longer [4.1 (SD 5.53) years] than men [1.6 (SD 2.69) years; p = 0.001] for the correct diagnosis, and consulted more doctors in the process [4.0 (SD 2.99) vs. 2.7 (SD 2.84) doctors, p < 0.001, respectively]. In 48.5 % of patients, acromegaly was diagnosed by an endocrinologist (men: 45.1 %; women: 52.4 %). Overall disease duration from symptom onset until last surgery was 5.5 (SD 6.85) years, with no sex differences. A change in employment status was the most commonly reported event after diagnosis and a quarter of the patients stated that the illness had changed their lives. CONCLUSIONS: Our findings confirm the urgent need to increase awareness of the clinical manifestation of acromegaly to facilitate an earlier diagnosis of the disease and to provide diagnostic equality across the sexes.
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