迈向以患者为中心的艾滋病病毒治疗连续过程:对南非常规数据中潜在偏差和错误的探索。
Moving towards a person-centred HIV care cascade: An exploration of potential biases and errors in routine data in South Africa.
作者信息
Etoori David, Wringe Alison, Reniers Georges, Gomez-Olive Francesc Xavier, Rice Brian
机构信息
University College London, London, United Kingdom.
London School of Hygiene and Tropical Medicine, London, United Kingdom.
出版信息
PLOS Glob Public Health. 2024 Jun 6;4(6):e0002509. doi: 10.1371/journal.pgph.0002509. eCollection 2024.
In 2022, in recognition of lags in data infrastructure, the World Health Organisation (WHO) recommended the use of routinely linked individual patient data to monitor HIV programmes. The WHO also recommended a move to person-centred care to better reflect the experiences of people living with HIV. The switch from aggregated service level data to person-centred data will likely introduce some biases and errors. However, little is understood about the direction and magnitude of these biases. We investigated HIV-testing and HIV-care engagement from 2014 to 2018 in the Agincourt Health and Demographic Surveillance System (HDSS). We digitised and linked HIV patient clinic records to HDSS population data in order to estimate biases in routine clinical data. Using this linked data, we followed all individuals linked to HIV-related clinic data throughout their care pathway. We built sequences to represent these pathways. We performed sequence and cluster analyses for all individuals to categorise patterns of care engagement and identified factors associated with different engagement patterns using multinomial logistic regression. Our analyses included 4947 individuals who were linked to 5084 different patient records. We found that routine data would have inflated patient numbers by 2% due to double counting. We also found that 2% of individuals included in our analyses had received multiple HIV tests. These phenomena were driven by undocumented transfers. Further analysis of engagement patterns found a low level of stable engagement in care (<33%). Engagement fell into three distinct clusters: (i) characterised by high rates of late ART initiation, unstable engagement in care, and high mortality (53.9%), (ii) characterised by early ART initiation followed by prolonged periods of LTFU (13.7%), and (iii) characterised by early ART initiation followed by stable engagement in care (32.4%). Compared to cluster (i) older individuals were less likely to be in cluster (ii) and more likely to be in cluster (iii). Those who initiated ART prior to 2016 were more likely to be in cluster (ii) and (iii) compared to cluster (i). Those who initiated ART for PMTCT (RRR: 1.88 (95% CI: 1.45, 2.44)) or TB coinfection (RRR: 2.11 (95% CI: 1.27, 3.50)) were more likely to be in cluster (ii) when compared to those who initiated ART due to CD4 eligibility criteria. Males (RRR: 0.63 (95% CI: 0.51, 0.77)) were less likely to be in cluster (iii) compared to cluster (i) as were those who initiated ART for PMTCT (RRR: 0.77 (95% CI: 0.62, 0.97)) or under test and treat guidelines when compared to those who initiated ART due to CD4 eligibility. Only a minority of patients are consistently engaged in care while the majority cycle between engagement and disengagement. Individual level data could be useful in monitoring programmes and accurately reporting patient figures if it is of high quality, has minimal missingness and is properly linked in order to account for biases that accrue from using this kind of data.
2022年,鉴于数据基础设施存在滞后问题,世界卫生组织(WHO)建议使用常规关联的个体患者数据来监测艾滋病项目。WHO还建议转向以患者为中心的护理模式,以更好地反映艾滋病患者的经历。从汇总的服务层面数据转向以患者为中心的数据可能会引入一些偏差和错误。然而,对于这些偏差的方向和程度人们了解甚少。我们在阿金库尔健康与人口监测系统(HDSS)中调查了2014年至2018年期间的艾滋病检测及艾滋病护理参与情况。我们将艾滋病患者的临床记录数字化,并将其与HDSS人口数据相链接,以估计常规临床数据中的偏差。利用这些链接数据,我们追踪了所有与艾滋病相关临床数据有链接的个体在其整个护理过程中的情况。我们构建了序列来代表这些过程。我们对所有个体进行了序列和聚类分析,以对护理参与模式进行分类,并使用多项逻辑回归确定与不同参与模式相关的因素。我们的分析纳入了4947名个体,他们与5084份不同的患者记录相关联。我们发现,由于重复计数,常规数据会使患者人数虚增2%。我们还发现,纳入我们分析的个体中有2%接受了多次艾滋病检测。这些现象是由未记录的转诊导致的。对参与模式的进一步分析发现护理中的稳定参与水平较低(<33%)。参与情况分为三个不同的类别:(i)其特征为抗逆转录病毒治疗(ART)开始较晚、护理参与不稳定且死亡率较高(53.9%),(ii)其特征为早期开始ART,随后是长时间的失访(13.7%),以及(iii)其特征为早期开始ART,随后护理参与稳定(32.4%)。与类别(i)相比,年龄较大的个体不太可能属于类别(ii),而更有可能属于类别(iii)。与类别(i)相比,2016年之前开始ART的个体更有可能属于类别(ii)和(iii)。与因CD4资格标准开始ART的个体相比,因预防母婴传播(PMTCT)(相对风险比(RRR):1.88(95%置信区间(CI):1.45,2.44))或合并结核病而开始ART的个体更有可能属于类别(ii)。与类别(i)相比,男性(RRR:0.63(95%CI:0.51,0.77))不太可能属于类别(iii),因PMTCT(RRR:0.77(95%CI:0.62,0.97))或在检测和治疗指南下开始ART的个体与因CD4资格开始ART的个体相比也不太可能属于类别(iii)。只有少数患者持续参与护理,而大多数患者在参与和退出之间循环。如果个体层面的数据质量高、缺失极少且链接得当,以考虑使用此类数据产生的偏差,那么它对于监测项目和准确报告患者数据可能会很有用。