In-Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets
In-Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets
复制标题
DOI：
10.1161/jaha.116.003783
复制
发表时间：
2016-08-01
影响因子：
5.4
通讯作者：
Kochilas, Lazaros K.
中科院分区：
文献类型：
--
作者：
Spector, Logan G.;Menk, Jeremiah S.;Kochilas, Lazaros K.
背景--接受先天性心脏病(CHD)介入治疗的患者的长期结果在很大程度上仍不清楚。我们将儿科心脏护理联盟(PCCC)与国家死亡指数(NDI)和器官共享数据集联合网络(UNOS)登记联系起来，研究干预后长达32年的死亡率和移植情况。目前分析的目的是确定这种联系在识别已知死亡或接受心脏移植的患者方面的敏感性。方法和结果-我们使用1982至2003年间在PCCC登记的59 324名受试者的直接识别符，通过与NDI和UNOS登记处的联系来测试已知生命和心脏移植状况的受试者病例确证的完整性。在4612例住院死亡病例中，3873例被NDI确定为“真实”匹配，敏感度为84.0%(95%可信区间为82.9-85.0)。在调整了年龄、性别、种族、名字的存在、死亡年份和死亡时的居住地后，25种先天性心血管疾病的敏感性没有差异。在PCCC已知的455例心脏移植中，在UNOS登记中有408例匹配，灵敏度为89.7%(95%可信区间，86.9-92.3)。截至2014年，在PCCC之外又发现了4851例死亡和363例移植。结论--PCCC与NDI和UNOS国家登记机构的联系是可行的，并具有令人满意的敏感性。这种关联提供了对该队列中长期死亡和心脏移植事件的保守估计。
Background-The long-term outcomes of patients undergoing interventions for congenital heart disease (CHD) remain largely unknown. We linked the Pediatric Cardiac Care Consortium (PCCC) with the National Death Index (NDI) and the United Network for Organ Sharing Dataset (UNOS) registries to study mortality and transplant occurring up to 32 years postintervention. The objective of the current analysis was to determine the sensitivity of this linkage in identifying patients who are known to have died or undergone heart transplant.Methods and Results-We used direct identifiers from 59 324 subjects registered in the PCCC between 1982 and 2003 to test for completeness of case ascertainment of subjects with known vital and heart transplant status by linkage with the NDI and UNOS registries. Of the 4612 in-hospital deaths, 3873 were identified by the NDI as "true" matches for a sensitivity of 84.0% (95% CI, 82.9-85.0). There was no difference in sensitivity across 25 congenital cardiovascular conditions after adjustment for age, sex, race, presence of first name, death year, and residence at death. Of 455 known heart transplants in the PCCC, there were 408 matches in the UNOS registry, for a sensitivity of 89.7% (95% CI, 86.9-92.3). An additional 4851 deaths and 363 transplants that occurred outside the PCCC were identified through 2014.Conclusions-The linkage of the PCCC with the NDI and UNOS national registries is feasible with a satisfactory sensitivity. This linkage provides a conservative estimate of the long-term death and heart transplant events in this cohort.