Rodrigues Camila Freitas de Andrade, Rodrigues Thiago Alves, de Oliveira Eduardo José Silva Gomes, Garcia João Batista Santos, Cartágenes Maria do Socorro de Sousa
Centro de Ciências Biológicas e da Saúde, Universidade Federal Universal do Maranhão (CCBS UFMA), São Luís, MA, Brazil.
Centro de Ciências Biológicas e da Saúde, Universidade Federal Universal do Maranhão (CCBS UFMA), São Luís, MA, Brazil.
Hematol Transfus Cell Ther. 2023 Jul;45 Suppl 2(Suppl 2):S3-S10. doi: 10.1016/j.htct.2021.06.002. Epub 2021 Jul 13.
The perception of prejudice against, and stigmatization of, sickle cell disease (SCD) leads the patient to perceive a different treatment, due to the disease stigma and may be related to a worse quality of life (QoL).
Describe and evaluate the perception of the prejudice against the disease and its impact on the quality of life of patients with sickle cell disease.
This is a cross-sectional study conducted between March 2019 and February 2020, with patients diagnosed with SCD. Patients were questioned about the perception of prejudice in any kind of situation, choosing between "Yes" or "No", not differentiating situations related to prejudice. To assess the QoL and impact of the disease, the volunteers answered a version of the SF-36 questionnaire translated and validated into Brazilian Portuguese.
In this study, 113 patients with SCD were followed up, 92% were classified as HbSS and the rest, divided between HbSC and HbS-β-0. Regarding the SF-36, the worst scores were in the summary of the physical components (mean 48.19 ± 21.51) and the physical aspect had the lowest mean (30.75 ±€42.65). When questioned if they had already perceived any kind of prejudice, including the SCD, 32.74% answered "Yes". For this comparison, there was a significant difference in the summary of the physical and mental components, with worse QoL for those who had already suffered prejudice.
Patients diagnosed with SCD who reported perception of prejudice had statistically significant worse QoL, revealing the negative impact, that might lead to sadness and social isolation.
对镰状细胞病（SCD）的偏见和污名化认知，会使患者因疾病污名而感受到不同的对待，这可能与较差的生活质量（QoL）有关。
描述并评估对该疾病偏见的认知及其对镰状细胞病患者生活质量的影响。
这是一项于2019年3月至2020年2月期间对被诊断为SCD的患者进行的横断面研究。询问患者在任何情况下对偏见的认知，在“是”或“否”之间选择，不区分与偏见相关的情况。为评估生活质量和疾病影响，志愿者回答了一份翻译成巴西葡萄牙语并经验证的SF - 36问卷版本。
在本研究中，对113例SCD患者进行了随访，92%被归类为HbSS，其余患者分为HbSC和HbS-β-0。关于SF - 36，最差得分出现在身体成分总结（平均48.19±21.51）中，身体方面的平均分最低（30.75±42.65）。当被问及是否曾感知到任何形式的偏见，包括对SCD的偏见时，32.74%的人回答“是”。对于这种比较，身体和心理成分总结存在显著差异，曾遭受偏见的患者生活质量更差。
报告有偏见认知的被诊断为SCD的患者，其生活质量在统计学上显著更差，揭示了可能导致悲伤和社会孤立的负面影响。
