The acromegaly registry of ten different centers in Turkey

Keskin, Çağlar; Demir, Özgür; Karci, Alper Cagri; Berker, Dilek; Cantürk, Zeynep; Yaylalı, Güzin Fidan; Topsakal, Şenay; Ersoy, Reyhan; Bayram, Fahri; Ertörer, Melek Eda; Bozkirli, Emre; Haydardedeoğlu, Filiz Ekşi; Dilekçi, Esra Nur Ademoğlu; Ay, Seyıt Ahmet; Cansu, Güven Barış; Şahi̇n, Mustafa; Emral, Rıfat; Çorapçıoğlu, Demet

doi:10.1016/j.ghir.2020.101322

Cited by 2 publications

(3 citation statements)

References 29 publications

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“…Acromegaly affects both males and females; many studies have demonstrated that females are more frequently affected, but some have indicated that both sexes are equally affected (9,14,15,17,18,21,22,(27)(28)(29). In the present study, females accounted for 58.8% of all patients, significantly larger than the percentage of males.…”

Section: Discussioncontrasting

confidence: 49%

“…Studies based on national registries or large-scale nationwide surveys have provided an in-depth understanding of the epidemiology, clinical features, diagnostic procedures, and treatment patterns and outcomes of patients with acromegaly (16)(17)(18)(19)(20)(21)(22)(23)(24). Region-specific data greatly help a country or region formulate medical policies related to the diagnosis and treatment of acromegaly, which in turn improve patient prognosis (23).…”

Section: Introductionmentioning

confidence: 99%

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

Guo

Wang

et al. 2020

Front. Endocrinol.

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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.

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