Real-world evidence of the burden of sickle cell disease: a 5-year longitudinal study at a Brazilian reference center

镰状细胞病负担的真实证据:巴西参考中心进行的一项为期 5 年的纵向研究

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作者:Gisele Dos Santos Barros, Carla Vaneska Fernandes Leal, Lauro Augusto Caetano Leite, Denys Eiti Fujimoto, Rodolfo Delfini Cançado

Conclusion

Results indicate the burden of SCD on Brazilian patients' daily lives, the impact of VOCs on public healthcare resources, the importance of having a national surveillance program to improve resource utilization and clinical outcomes of patients with SCD and the urgent need for the revitalizing of the current national comprehensive SCD care programs.

Results

Among a total of 100 eligible adult patients, the median age was 31.0 years old, 84% of the patients were aged between 18 and 45 years old; 59% were women and 91% presented the genotype HbSS. The number of hematologist and non-hematologist visits at the outpatient unit were 2,198 and 1,436, respectively. The number of hospital ER visits was 758, of which 51% required 864 days of hospitalization. The main cause for seeking hospital medical care was the VOCs. The numbers and ratios of VOCs were: 1 to 10 VOCs, 64%; 11 to 20, 15%, and; 21 or more, 1%. There was a statistically significant difference between the number of VOCs and hospitalizations, as well as infection.

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