Guerrero-Torres Lorena, Barbosa-Ramírez Bibiana Montserrat, Belaunzarán-Zamudio Pablo F, Alegre-Díaz Jesús, Ramírez Raúl, Rosa-Parra Antonio, Sierra-Madero Juan, Crabtree-Ramírez Brenda, Vega Yanink Caro
Departamento de Infectología, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Vasco de Quiroga # 15, Ciudad de México, 14080, México.
General Directorate of Epidemiology of Mexico, Mexico City, Mexico.
BMC Public Health. 2025 Jul 17;25(1):2489. doi: 10.1186/s12889-025-23542-1.
INTRODUCTION: Loss to follow-up (LTFU) bias mortality estimates in cohort studies. This study aimed to estimate the corrected incidence of LTFU, retention in care, and mortality rates in people with HIV (PWH) in an HIV/AIDS Clinic in Mexico City, by linking clinic and national registry data, and to identify characteristics associated with LTFU. METHODS: We linked adult PWH who met lost to follow-up criteria while enrolled at a Mexico City clinic with the national death registry, a national administrative HIV database and a clinical national registry in May 2019 and January 2021. We defined lost to follow-up as absence of a documented clinical contact in the previous 180 days. We estimated corrected LTFU, retention in care, mortality rates, and survival, and identified characteristics associated to LTFU. RESULTS: Among 2,826 PWH followed by a median of 5.9 years (IQR: 1.9-7.1), 804 (28.4%) were lost and 149 (5.3%) died. After the second linkage, of the 804 lost, 257 (32%) died, 175 (21.8%) transferred, 40 (4.9%) were retained in care, and 332 (41.3%) remained LTFU. Post second linkage, the corrected cumulative proportion of LTFU slightly decreased (n = 764, 27%), but deaths substantially increased (n = 459, 16.2%). A subset of PWH transferred to other centres (n = 184, 6.5%). The unadjusted LTFU rate decreased from 4.0 to 2.9 per 100 person-years (PY), while mortality increased from 0.7 to 1.7 per 100 PY. Younger age (aHR 1.5, 95%CI 1.38-1.63 per 10-year change), and lower education (aHR 1.05, 95%CI 1.01-1.08 per year) were associated to a higher risk of LTFU. CONCLUSION: Datasets linkages revealed mortality rates three times higher than the original estimates, highlighting the limitations of relying in single-source data. At the individual level, identifying predictors of LTFU can help target interventions to improve retention and may reduce mortality. However, at the system-level, our study demonstrates the feasibility and value of cross-institutional data linkage in fragmented health systems. Key lessons include the importance of long-term, privacy-preserving data-sharing collaboration between institutions to improve patient tracking across institutions, mortality surveillance and care continuity.
引言：队列研究中失访（LTFU）会使死亡率估计产生偏差。本研究旨在通过将诊所数据与国家登记数据相链接，估算墨西哥城一家艾滋病毒/艾滋病诊所中艾滋病毒感染者（PWH）的校正失访发生率、护理留存率和死亡率，并确定与失访相关的特征。 方法：我们将2019年5月和2021年1月在墨西哥城一家诊所登记时符合失访标准的成年艾滋病毒感染者与国家死亡登记处、国家艾滋病毒管理数据库以及国家临床登记处进行了链接。我们将失访定义为过去180天内无临床接触记录。我们估算了校正后的失访率、护理留存率、死亡率和生存率，并确定了与失访相关的特征。 结果：在2826名中位随访时间为5.9年（四分位间距：1.9 - 7.1年）的艾滋病毒感染者中，804人（28.4%）失访，149人（5.3%）死亡。第二次链接后，在804名失访者中，257人（32%）死亡，175人（21.8%）转诊，40人（4.9%）仍在接受护理，332人（41.3%）仍处于失访状态。第二次链接后，校正后的失访累积比例略有下降（n = 764，27%），但死亡人数大幅增加（n = 459，16.2%）。一部分艾滋病毒感染者转诊至其他中心（n = 184，6.5%）。未经调整的失访率从每100人年4.0降至2.9，而死亡率从每100人年0.7升至1.7。年龄较小（每10年变化的调整后风险比[aHR]为1.5，95%置信区间[CI]为1.38 - 1.63）和教育程度较低（每年的aHR为1.05，95%CI为1.01 - 1.08）与失访风险较高相关。 结论：数据集链接显示死亡率比原始估计值高三倍，凸显了依赖单一来源数据的局限性。在个体层面，识别失访的预测因素有助于针对性地进行干预以提高留存率，并可能降低死亡率。然而，在系统层面，我们的研究证明了在碎片化卫生系统中跨机构数据链接的可行性和价值。关键经验教训包括机构间长期、保护隐私的数据共享合作对于改善跨机构患者追踪、死亡率监测和护理连续性的重要性。
Cochrane Database Syst Rev. 2008-7-16
Cochrane Database Syst Rev. 2005-4-18
Cochrane Database Syst Rev. 2024-6-3
Cochrane Database Syst Rev. 2024-8-5
Lancet Digit Health. 2023-10
Lancet Digit Health. 2023-11
Lancet Public Health. 2023-9
J Acquir Immune Defic Syndr. 2022-11-1
BMC Public Health. 2021-8-28
Zotero 插件