Patient Characteristics, Diagnostic Delays, Treatment Patterns, Treatment Outcomes, Comorbidities, and Treatment Costs of Acromegaly in China: A Nationwide Study.

Xiaopeng Guo,Dong Dong,Zihao Wang,Lu Gao,Siyue Yu,Kailu Wang,Shuyang Zhang,Huijuan Zhu,Bing Xing

doi:10.3389/fendo.2020.610519

Abstract

PurposeAcromegaly is a rare, intractable endocrine disease. We aimed to describe the patient characteristics, diagnostic delays, treatment patterns, treatment outcomes, comorbidities and treatment costs of acromegaly in China.MethodsThis is a nationwide cross-sectional study. Patients diagnosed with and treated for acromegaly between 1996 and 2019 across China were surveyed via the Chinese Association of Patients with Acromegaly platform.ResultsIn total, 473 patients (58.8% females, mean age at diagnosis: 39.4±9.5 years) were included. The median disease duration was 3 years. The most common symptoms were extremity enlargement (91.8%) and facial changes (90.1%). Overall, 63.0% of patients experienced diagnostic delays within healthcare systems; 63.8% of the delays were <1 year. The most common first-line therapy was surgery with a transsphenoidal (76.1%) or transcranial approach (3.2%). Somatostatin analogues or dopamine agonists were administered in 20.5% of the patients as first-line therapies and in 41.7% as adjuvant therapies. Radiotherapy was performed in 32.1% of patients, 99.3% of whom received radiotherapy as an adjuvant therapy. After a median 5-year follow-up, 46.2% achieved biochemical control. Comorbidities were reported in 88.2% of the patients at follow-up; memory deterioration and thyroid nodules were the most common. Controlled patients had greater improvements in symptoms and comorbidities during follow-up than uncontrolled patients. The annual per-capita cost-of-treatment was $11013 in 2018, with medical treatments being the largest contributor (67%). Medical insurance covered 47.2% of all treatment costs.ConclusionThis study provides the first comprehensive description of real-world acromegaly data in China, serving as a basis for future population-based studies.

Highlights

Caused by a growth hormone (GH)-secreting pituitary adenoma in most cases, is a rare, slow progressing endocrine disease [1]
Somatostatin analogues or dopamine agonists were administered in 20.5% of the patients as first-line therapies and in 41.7% as adjuvant therapies
GH over-secretion leads to increased serum insulin-like growth factor 1 (IGF-1), and both hormones result in a series of acromegaly-associated symptoms, i.e., facial appearance changes; overgrowth of hands and feet; headache; visual field defects; and comorbidities affecting the cardiovascular system, respiratory system, musculoskeletal organs, endocrine/metabolic system, etc [3,4,5,6,7]

Summary

Introduction

Caused by a growth hormone (GH)-secreting pituitary adenoma in most cases, is a rare, slow progressing endocrine disease [1]. The main therapeutic goals include normalization of the circulating levels of GH and IGF1, removal of pituitary tumors without damaging the adjacent structures, amelioration of symptoms and comorbidities, and restoration of normal life expectancy and QoL [3, 4, 10]. Treatment options for acromegaly include surgical resection of pituitary adenomas, medical treatment to control hormone secretion and tumor growth, and radiotherapy, with transsphenoidal surgery being the first-line treatment for most patients [4, 7]. Apart from the negative health-related effects, acromegaly leads to a considerable economic burden for patients themselves, their families, the healthcare system and society as a whole [14, 15]

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