title: Failure to achieve disease control in acromegaly: cause analysis by a registry-based survey.
abstract: Disease control is a prime target in acromegaly treatment. This should be achievable in the vast majority of patients by available treatment options. For unknown reasons, however, a significant number of patients do not achieve disease control.
  
  
  
  To investigate reasons for failure to achieve disease control in long-standing acromegaly.
  
  
  
  Survey based on the German Acromegaly Registry database (1755 patients in 57 centres). Questionnaires were sent to 47 centres treating 178 patients with elevated disease markers (IGF1 and GH) at the last documented database visit out of 1528 patients with a diagnosis dated back ≥2 years. Thirty-three centres returned anonymised information for 120 patients (recall rate 67.4%).
  
  
  
  Median age of the 120 patients (58 females) was 57 years (range 17-84). Ninety-four patients had at least one operation, 29 had received radiotherapy and 71 had been previously treated medically. Comorbidities were reported in 67 patients. In 61 patients, disease activity had been controlled since the last documented database visit, while 59 patients still had biochemically active disease. Reasons were patients' denial to escalate therapy (23.3%), non-compliance (20.6%), fluctuating insulin-like growth factor 1 (IGF-1) and growth hormone (GH) levels with normal values at previous visits (23.3%) and modifications in pharmacotherapy (15.1%). Therapy resistance (9.6%), drug side effects (4.1%) and economic considerations (4.1%) were rare reasons.
  
  
  
  Main reasons for long-standing active acromegaly were patients' lack of motivation to agree to therapeutic recommendations and non-compliance with medical therapy. Development of patient education programmes could improve long-term control and thus prognosis of acromegalic patients.
authors.affiliation: Division of Endocrinology and DiabetesDepartment of Medicine 1, Friedrich-Alexander University Erlangen-Nuremberg, Ulmenweg 18, 91054 Erlangen, GermanyCenter of Endocrinology and DiabetesStuttgart, GermanyDepartment of NeurosurgeryEberhard Karls University Tuebingen, Tuebingen, GermanyMedical DepartmentUniversity of Leipzig, Leipzig, GermanyLohmann and Birkner Health Care Consulting GmbHBerlin, GermanyMedizinische Klinik IVLudwig-Maximilian-University Munich, Munich, Germany christof.schoefl@uk-erlangen.de.
authors.forename: Christof
authors.initials: C
authors.lastname: Schöfl
authors.affiliation: Division of Endocrinology and DiabetesDepartment of Medicine 1, Friedrich-Alexander University Erlangen-Nuremberg, Ulmenweg 18, 91054 Erlangen, GermanyCenter of Endocrinology and DiabetesStuttgart, GermanyDepartment of NeurosurgeryEberhard Karls University Tuebingen, Tuebingen, GermanyMedical DepartmentUniversity of Leipzig, Leipzig, GermanyLohmann and Birkner Health Care Consulting GmbHBerlin, GermanyMedizinische Klinik IVLudwig-Maximilian-University Munich, Munich, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Grussendorf
authors.affiliation: Division of Endocrinology and DiabetesDepartment of Medicine 1, Friedrich-Alexander University Erlangen-Nuremberg, Ulmenweg 18, 91054 Erlangen, GermanyCenter of Endocrinology and DiabetesStuttgart, GermanyDepartment of NeurosurgeryEberhard Karls University Tuebingen, Tuebingen, GermanyMedical DepartmentUniversity of Leipzig, Leipzig, GermanyLohmann and Birkner Health Care Consulting GmbHBerlin, GermanyMedizinische Klinik IVLudwig-Maximilian-University Munich, Munich, Germany.
authors.forename: Jürgen
authors.initials: J
authors.lastname: Honegger
authors.affiliation: Division of Endocrinology and DiabetesDepartment of Medicine 1, Friedrich-Alexander University Erlangen-Nuremberg, Ulmenweg 18, 91054 Erlangen, GermanyCenter of Endocrinology and DiabetesStuttgart, GermanyDepartment of NeurosurgeryEberhard Karls University Tuebingen, Tuebingen, GermanyMedical DepartmentUniversity of Leipzig, Leipzig, GermanyLohmann and Birkner Health Care Consulting GmbHBerlin, GermanyMedizinische Klinik IVLudwig-Maximilian-University Munich, Munich, Germany.
authors.forename: Anke
authors.initials: A
authors.lastname: Tönjes
authors.affiliation: Division of Endocrinology and DiabetesDepartment of Medicine 1, Friedrich-Alexander University Erlangen-Nuremberg, Ulmenweg 18, 91054 Erlangen, GermanyCenter of Endocrinology and DiabetesStuttgart, GermanyDepartment of NeurosurgeryEberhard Karls University Tuebingen, Tuebingen, GermanyMedical DepartmentUniversity of Leipzig, Leipzig, GermanyLohmann and Birkner Health Care Consulting GmbHBerlin, GermanyMedizinische Klinik IVLudwig-Maximilian-University Munich, Munich, Germany.
authors.forename: Daniel
authors.initials: D
authors.lastname: Thyroke-Gronostay
authors.affiliation: Division of Endocrinology and DiabetesDepartment of Medicine 1, Friedrich-Alexander University Erlangen-Nuremberg, Ulmenweg 18, 91054 Erlangen, GermanyCenter of Endocrinology and DiabetesStuttgart, GermanyDepartment of NeurosurgeryEberhard Karls University Tuebingen, Tuebingen, GermanyMedical DepartmentUniversity of Leipzig, Leipzig, GermanyLohmann and Birkner Health Care Consulting GmbHBerlin, GermanyMedizinische Klinik IVLudwig-Maximilian-University Munich, Munich, Germany.
authors.forename: Bernhard
authors.initials: B
authors.lastname: Mayr
authors.affiliation: Division of Endocrinology and DiabetesDepartment of Medicine 1, Friedrich-Alexander University Erlangen-Nuremberg, Ulmenweg 18, 91054 Erlangen, GermanyCenter of Endocrinology and DiabetesStuttgart, GermanyDepartment of NeurosurgeryEberhard Karls University Tuebingen, Tuebingen, GermanyMedical DepartmentUniversity of Leipzig, Leipzig, GermanyLohmann and Birkner Health Care Consulting GmbHBerlin, GermanyMedizinische Klinik IVLudwig-Maximilian-University Munich, Munich, Germany.
authors.forename: Jochen
authors.initials: J
authors.lastname: Schopohl
mesh_terms: D000172:Acromegaly / Q000453:epidemiology* / Q000628:therapy*; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003625:Data Collection; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D012042:Registries; D017211:Treatment Failure; D055815:Young Adult