title: Diagnosis and management of acromegaly: the patient's perspective.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Neurosurgery, University of Duisburg-Essen, Hufelandstr. 55, 45147, Essen, Germany. ilonka.kreitschmann@uk-essen.de.|Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany. ilonka.kreitschmann@uk-essen.de.
authors.forename: Ilonka
authors.initials: I
authors.lastname: Kreitschmann-Andermahr
authors.affiliation: Department of Neurosurgery, University of Duisburg-Essen, Hufelandstr. 55, 45147, Essen, Germany.|Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany.
authors.forename: Sonja
authors.initials: S
authors.lastname: Siegel
authors.affiliation: Department of Neurosurgery, University of Duisburg-Essen, Hufelandstr. 55, 45147, Essen, Germany.
authors.forename: Bernadette
authors.initials: B
authors.lastname: Kleist
authors.affiliation: Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany.
authors.forename: Johannes
authors.initials: J
authors.lastname: Kohlmann
authors.affiliation: Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany.
authors.forename: Daniel
authors.initials: D
authors.lastname: Starz
authors.affiliation: Institute of Neuropathology, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany.
authors.forename: Rolf
authors.initials: R
authors.lastname: Buslei
authors.affiliation: Department of Women's and Children's Health, Uppsala University, Akademiska Sjukhuset, 751 85, Uppsala, Sweden.
authors.forename: Maria
authors.initials: M
authors.lastname: Koltowska-Häggström
authors.affiliation: Department of Endocrinology, Diabetes and Nutritional Medicine, Charité Universitaetsmedizin, Campus Charité Mitte, Charitéplatz 1, 10117, Berlin, Germany.
authors.forename: Christian J
authors.initials: CJ
authors.lastname: Strasburger
authors.affiliation: Department of Neurosurgery, Friedrich-Alexander University (FAU) of Erlangen-Nuremberg, Schwabachanlage 6, 91031, Erlangen, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Buchfelder
mesh_terms: D000236:Adenoma / Q000175:diagnosis* / Q000378:metabolism / Q000628:therapy*; D000328:Adult; D000359:Aftercare; D000970:Antineoplastic Agents / Q000627:therapeutic use; D016371:Cranial Irradiation; D057210:Delayed Diagnosis / Q000706:statistics & numerical data*; D005260:Female; D005951:Glucose Tolerance Test; D049912:Growth Hormone-Secreting Pituitary Adenoma / Q000175:diagnosis* / Q000378:metabolism / Q000628:therapy*; D019382:Human Growth Hormone / Q000378:metabolism; D006801:Humans; D007016:Hypophysectomy; D007334:Insulin-Like Growth Factor I / Q000378:metabolism; D008279:Magnetic Resonance Imaging; D008297:Male; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D017060:Patient Satisfaction; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D012737:Sex Factors; D011795:Surveys and Questionnaires; D013997:Time Factors
chemical_list: D000970:Antineoplastic Agents; D019382:Human Growth Hormone; D007334:Insulin-Like Growth Factor I
keywords: Acromegaly; Diagnosis; Impairment; Patient’s perspective; Treatment