Background On‐demand clotting factor concentrate (CFC) replacement therapy remains the predominant management strategy for adult people with hemophilia in Indonesia due to resource and policy limitations. However, this approach does not prevent long‐term complications. This study aimed to describe the bleeding profile, complications, and invasive procedures among adult people with hemophilia A and B receiving on‐demand CFC therapy in a tertiary referral hospital. Methods We conducted a retrospective cross‐sectional study at Cipto Mangunkusumo Hospital, Jakarta, from March 2024 to May 2025. Adult patients (≥ 18 years) diagnosed with hemophilia A or B were consecutively recruited through nonprobability sampling. Demographics, comorbidities, bleeding manifestations, CFC treatment patterns, complications, and history of invasive procedures were collected from electronic medical records and analyzed descriptively. Results A total of 120 patients were included (94 with hemophilia A and 26 with hemophilia B), with most having severe disease (80%). Comorbidities were present in 43.3%, predominantly hepatitis C (21.7%). Patients averaged three outpatient visits per month, receiving 24.5 IU/kg of factor VIII or 17.6 IU/kg of factor IX per infusion. The median annualized bleeding rate was 26 for hemophilia A and 31 for hemophilia B. All patients experienced hemarthrosis, commonly affecting multiple joints, especially the knees (65.8%), elbows (41.7%), and ankles (40.9%). Other frequent bleeding manifestations included gum bleeding (19.2%) and soft tissue hematomas (15.8%). Hemophilic arthropathy was observed in 10.9%, primarily involving the knees, while hemophilic pseudotumor occurred in 1.7%. Invasive procedures were recorded in 26.5% of patients, more frequently among those with hemophilia A compared with hemophilia B (28.9% vs. 19.1%). The most common procedures were odontectomy and orthopedic surgeries. Conclusion Episodic on‐demand CFC replacement therapy remains the primary treatment for adult people with hemophilia in Indonesia. Bleeding manifestations remain frequent, and a substantial proportion of patients have undergone invasive procedures. These findings support the need to prioritize prophylactic therapy and early management of hemophilia‐related complications.
Sukrisman et al. (2026) studied this question.