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

Abstract

Purpose: Acromegaly 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.

Methods: This 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.

Results: In 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.

Conclusion: This study provides the first comprehensive description of real-world acromegaly data in China, serving as a basis for future population-based studies.

Keywords: China; acromegaly; comorbidity; diagnostic delay; economic burden; endocrine remission; treatment patterns.

Figure 1

Frequencies of symptoms among patients with acromegaly in China. Black bars represent the frequencies of symptoms at the time of diagnosis, and grey bars represent the frequencies of symptoms at a median follow-up time of 5 years after treatment. * indicates that the reduction in frequency after treatment is significant (p < 0.05).

Figure 2

Frequencies of symptoms and comorbidities among controlled patients and uncontrolled patients at follow-up. The symptom panel (upper) includes two histograms showing the frequencies of symptoms among controlled patients and uncontrolled patients. The comorbidity panel (lower) includes two histograms showing the frequencies of comorbidities among controlled patients and uncontrolled patients. * indicates that the difference in frequency between controlled patients and uncontrolled patients is significant (p < 0.05).