Lim S Sam, Kan Hong, Pobiner Bonnie F, Bao Gaobin, Drenkard Cristina
Department of Medicine, Division of Rheumatology, Emory University School of Medicine, Atlanta, Georgia, USA.
Department of Epidemiology, Emory University School of Public Health, Atlanta, Georgia, USA.
Lupus Sci Med. 2019 Aug 12;6(1):e000322. doi: 10.1136/lupus-2019-000322. eCollection 2019.
To evaluate patient perceptions of biologic therapies from a large, population-based cohort of patients with SLE with significant numbers of blacks and whites and across the full spectrum of socioeconomic strata and disease severity.
This was a cross-sectional study of validated patients with SLE enrolled in the Georgians Organized Against Lupus Cohort between September 2014 and August 2015. The survey instrument was developed ad hoc by the authors and contained an introduction on biologics.
A total of 676 participants were on average 48.4 years old with 15.9 years of disease; 93.2% were female and 80.6% were black; 34.2% had private health insurance and 9.8% had no insurance; and 26.8% and 27.5% had Medicare or Medicaid, respectively. Of all respondents, 30.8% had heard of biologics, with a significant difference between blacks and whites (25.2% vs 53.4%, respectively). There were no significant differences, however, between blacks and whites with respect to ever having been on biologics (7.6% and 11.5%, respectively) or where they got their information about biologics. Out of 202 individuals who had heard of biologics, 102 (51.3%) were familiar with potential benefits or side effects, and most (n=129, 66.5%) had a neutral perception to risks associated with biologic use. There was no perception of biologics working differently between races/ethnicities. More (n=76, 62.8%) blacks preferred intravenous over subcutaneous modalities compared with whites (n=12, 37.5%) but were not as willing to pay as much out of pocket for it. Individuals with Medicare were significantly more likely to have been on biologics.
There are important similarities and differences between blacks and whites with lupus with respect to their perceptions of biologic therapies and their impact. There are opportunities to increase patient exposure to information about biologics and improve their understanding in order for them to make the best informed decision possible.
从一个以人群为基础的大型系统性红斑狼疮（SLE）队列中评估患者对生物疗法的看法，该队列包含大量黑人和白人患者，涵盖了社会经济阶层和疾病严重程度的全范围。
这是一项对2014年9月至2015年8月期间纳入佐治亚州抗狼疮队列的经过验证的SLE患者进行的横断面研究。调查工具由作者临时开发，包含关于生物制剂的介绍。
共有676名参与者，平均年龄48.4岁，患病15.9年；93.2%为女性，80.6%为黑人；34.2%有私人医疗保险，9.8%没有保险；26.8%和27.5%分别有医疗保险或医疗补助。在所有受访者中，30.8%听说过生物制剂，黑人和白人之间存在显著差异（分别为25.2%和53.4%）。然而，在是否曾使用过生物制剂（分别为7.6%和11.5%）或获取生物制剂信息的渠道方面，黑人和白人之间没有显著差异。在202名听说过生物制剂的个体中，102名（51.3%）熟悉其潜在益处或副作用，大多数（n = 129，66.5%）对生物制剂使用相关风险持中立看法。没有察觉到生物制剂在不同种族/族裔中的作用存在差异。与白人（n = 12，37.5%）相比，更多黑人（n = 76，62.8%）更喜欢静脉注射而非皮下注射方式，但他们不愿意为此支付同样多的自付费用。有医疗保险的个体使用生物制剂的可能性显著更高。
患有狼疮的黑人和白人在对生物疗法的看法及其影响方面存在重要的异同。有机会增加患者接触生物制剂信息的机会并增进他们的理解，以便他们能够做出最明智的决策。
