Patient perceptions and preferences of biologic therapies in SLE.
Patient perceptions and preferences of biologic therapies in SLE.
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患者对 SLE 生物疗法的看法和偏好。
DOI：
10.1136/lupus-2019-000322
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发表时间：
2019
影响因子：
3.9
通讯作者：
Drenkard,Cristina
中科院分区：
文献类型：
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作者：
Lim,SSam;Kan,Hong;Pobiner,BonnieF;Bao,Gaobin;Drenkard,Cristina
目的评估大量以人群为基础的系统性红斑狼疮(SLE)患者对生物疗法的看法，这些患者中有大量的黑人和白人，涉及社会经济阶层和疾病严重程度的所有范围。方法这是一项横断面研究，研究对象是2014年9月至2015年8月在格鲁吉亚组织的反对狼疮队列组织中登记的经过验证的SLE患者。结果676名调查对象平均年龄48.4岁，平均患病年限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%有医疗保险或医疗补助。在所有受访者中，30.8%的人听说过生物制品，黑人和白人之间存在显著差异(分别为25.2%和53.4%)。然而，黑人和白人在曾经接触过生物制品(分别为7.6%和11.5%)或他们从哪里获得有关生物制品的信息方面没有显著差异。在202名听说过生物制品的人中，102人(51.3%)熟悉潜在的益处或副作用，大多数(n=129，66.5%)对与生物使用相关的风险持中性看法。没有人认为生物制剂在种族/民族之间有不同的作用。与白人(n=12，37.5%)相比，更多的黑人(n=76，62.8%)倾向于静脉注射而不是皮下注射，但不愿自掏腰包。患有狼疮的黑人和白人在对生物疗法的认知及其影响方面有重要的相似和不同之处。有机会增加患者对生物制品信息的接触，并提高他们的理解，以便他们尽可能做出最明智的决定。
ObjectiveTo 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.MethodsThis 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.ResultsA 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.ConclusionsThere 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.