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
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.
Eur J Endocrinol. 2015 Apr;172(4):351-6. doi: 10.1530/EJE-14-0844. Epub 2015 Jan 19.
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.
在肢端肥大症的治疗中，疾病控制是主要目标。通过现有的治疗选择，绝大多数患者应该能够实现这一目标。然而，由于未知原因，仍有相当数量的患者无法实现疾病控制。
研究长期肢端肥大症患者疾病控制失败的原因。
基于德国肢端肥大症登记处数据库（57 个中心的 1755 名患者）的调查。向在最后一次有记录的数据库就诊时疾病标志物（IGF1 和 GH）升高的 178 名患者所在的 47 个中心发送了问卷，这些患者中有 1528 名患者的诊断时间超过 2 年。33 个中心返回了 120 名患者的匿名信息（召回率 67.4%）。
120 名患者（58 名女性）的中位年龄为 57 岁（范围 17-84 岁）。94 名患者至少接受过一次手术，29 名患者接受过放疗，71 名患者曾接受过药物治疗。67 名患者报告有合并症。在 61 名患者中，自最后一次有记录的数据库就诊以来，疾病活动得到了控制，而 59 名患者的疾病仍具有生物活性。原因包括患者拒绝升级治疗（23.3%）、不遵守治疗方案（20.6%）、之前就诊时 IGF-1 和生长激素（GH）水平波动但正常（23.3%）以及药物治疗方案修改（15.1%）。治疗抵抗（9.6%）、药物副作用（4.1%）和经济考虑（4.1%）是罕见的原因。
长期活动性肢端肥大症的主要原因是患者缺乏接受治疗建议的动力和不遵守药物治疗方案。制定患者教育计划可以改善长期控制，从而改善肢端肥大症患者的预后。
