ArticleScientific reports2025
Retrospective analysis of clinical data from 171 low-income patients with hemophilia in Shandong Province.
Article in Scientific reports, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
To enhance attention on low-income patients with hemophilia, it is essential to urge governments and coagulation factor manufacturers to increase their investment in hemophilia care. This would ensure that low-income patients receive an adequate supply of clotting factors for both replacement therapy and prophylaxis. Clinical data from 171 low-income hemophilia patients were collected in Shandong Province between January 2017 and December 2019. "Low-income" is defined as having a per capita disposable income below the average for the years 2017 to 2019 in Shandong Province. The data collected included age, education, activity levels of factor VIII/IX and anti-factor VIII/IX inhibitors, therapeutic regimen, viral infections, and annual bleeding rate (ABR). Additionally, the translated and validated Chinese version of the Haemophilia Quality of Life questionnaire for adults (Haem-QoL-A), Hemophilia Joint Health Scores (HJHS), and annualized consumption of factor VIII or prothrombin complex concentrate (PCC) were applied. In our study, a total of 171 male patients-131 adults and 40 children-were included, and the median age was 30 years. The average annual income of these patients was $446.9. Of these, 133 patients (77.8%) were diagnosed with hemophiliac arthropathy. Eight out of 150 patients had anti-factor VIII inhibitors, while only one patient had anti-factor IX inhibitors. Among the 171 patients, only six children received low-dose prophylaxis (10-15 IU/kg, 1-2 times per week), while the remaining 165 patients received only inadequate on-demand treatment. In terms of viral infections, 20 patients (11.7%) were infected with transfusion-associated viruses. The median annual bleeding rate (ABR) was 20 bleeding events per year (range: 2-100). The mean Haem-QoL-A score was 62.3 ± 14.5. The mean total Hemophilia Joint Health Score (HJHS) for children was 8.1 ± 7.1, and for adults with hemophilia A or B (HA/HB), it was 40.1 ± 20.0 (P < 0.05). The annual per capita factor dosage for the 171 low-income hemophilia patients was calculated to be 6,182 IU/year. Providing additional support and care for low-income patients is crucial. Early prophylaxis in children is particularly important for protecting joint health.
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