Farrukh Affifa, Mayberry John F
Department of Digestive Diseases, University Hospitals of Leicester NHS Trust, Leicester, UK.
Department of Digestive Diseases, University Hospitals of Leicester NHS Trust, Leicester, UK
Med Leg J. 2015 Jun;83(2):104-8. doi: 10.1177/0025817214563907. Epub 2015 Jan 7.
In this study, we investigate whether the provision of biologic therapy for Crohn's disease is equitable across South Asian and English groups in NHS Trusts, which serve areas with significant ethnic variation. Data were requested from 10 NHS Trusts using a Freedom of Information (FOI) approach. Details of numbers of patients by ethnicity treated with infliximab or adalumimab for Crohn's disease between 2010 and 2012 were requested. Using population-based estimates of disease prevalence and Census data on population structure, observed and expected numbers who should have received treatment were calculated. In three Trusts, the number of South Asian patients who received such treatment was significantly less than British/White patients. These were: Pennine Acute Hospitals NHS Trust covering Oldham and North Manchester, Barking, Havering & Redbridge University Hospitals NHS Trust and University Hospitals of Leicester NHS Trust. The study is limited by several factors: 1. The only data available on prevalence in both English and South Asian communities comes from Leicester and was published in 1993. More recent data suggests that the prevalence of Crohn's disease now approaches 150/10(5) compared to the 76/10(5) for English patients which was recorded in Leicester. However, the two subsequent studies on prevalence which were published in 2000 from the North of England and 2010 from Scotland do not provide a breakdown by ethnicity. 2. The data were collected by administrative staff using a variety of approaches to their Trust's data bases and so the techniques used in each Trust are not comparable. In addition, studies from elsewhere suggest that the quality of FOI data is affected by the motivation of staff who collect the data. 3. With the exception of Leicester, there was no quality check on the accuracy of the data. In Leicester, 139 patients were on a register of biologic therapy and this compared with 343 patients reported by the FOI request. However, the proportions of patients by type of treatment and by ethnicity were comparable in the two data sets. This suggests that the data on ethnic differences reported by the FOI study reflects real differences. Clearly, there are South Asian communities where patients with Crohn's disease appear not to receive appropriate treatment in the form of biologics, and the reasons behind this need further consideration and investigation. We need to develop robust methods of monitoring the provision of biologic therapy across ethnic groups and communities. It is unacceptable for there to be a difference based on such grounds.
在本研究中，我们调查了在国民保健服务信托机构（NHS Trusts）中，为克罗恩病提供生物疗法对于南亚裔和英国裔群体是否公平，这些信托机构服务于种族差异显著的地区。我们采用信息自由（FOI）的方法，向10家NHS信托机构索要数据。我们索要了2010年至2012年间，按种族划分的接受英夫利昔单抗或阿达木单抗治疗克罗恩病的患者人数详情。利用基于人群的疾病患病率估计值以及关于人口结构的人口普查数据，计算出应该接受治疗的观察人数和预期人数。在3家信托机构中，接受此类治疗的南亚裔患者人数明显少于英国裔/白人患者。这3家机构分别是：覆盖奥尔德姆和北曼彻斯特的宾尼恩急性医院国民保健服务信托机构、巴金、哈弗林和雷德布里奇大学医院国民保健服务信托机构以及莱斯特大学医院国民保健服务信托机构。该研究受到几个因素的限制：1. 关于英国社区和南亚社区患病率的唯一可用数据来自莱斯特，且于1993年公布。最新数据表明，克罗恩病的患病率目前接近150/10⁵，而莱斯特记录的英国患者患病率为76/10⁵。然而，随后于2000年在英格兰北部以及2010年在苏格兰发表的两项关于患病率的研究并未按种族进行细分。2. 数据由行政人员通过多种方式从其信托机构的数据库收集，因此每个信托机构使用的技术不具有可比性。此外，其他地方的研究表明，信息自由数据的质量受数据收集人员动机的影响。3. 除莱斯特外，未对数据的准确性进行质量检查。在莱斯特，有139名患者在生物疗法登记册上，而信息自由请求报告的患者为343名。然而，两个数据集中按治疗类型和种族划分的患者比例具有可比性。这表明信息自由研究报告的种族差异数据反映了真实差异。显然，在一些南亚社区，克罗恩病患者似乎没有以生物制剂的形式接受适当治疗，这背后的原因需要进一步考虑和调查。我们需要制定强有力的方法来监测不同种族群体和社区生物疗法的提供情况。基于这种理由存在差异是不可接受的。
