当比较不同国家的囊性纤维化登记处结果时，数据问题的重要性：英国仅在受试者病情良好时才收集年度 FEV 吗？
The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV in the UK only collected when subjects are well?
机构信息
School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK.
Sheffield Adult CF Centre, Northern General Hospital, Sheffield, UK.
出版信息
J Eval Clin Pract. 2018 Aug;24(4):745-751. doi: 10.1111/jep.12967. Epub 2018 Jun 14.
RATIONALE, AIMS AND OBJECTIVE: Cross-country comparisons of cystic fibrosis (CF) outcomes can potentially identify variation in care but are dependent on data quality. An important assumption is that the UK annual review FEV is only collected during periods of clinical stability. If this assumption does not hold, results of FEV comparisons may be biased in favour of registries with encounter-based FEV . We aimed to test the assumption that CF annual reviews in the UK are only performed during periods of clinical stability.
METHOD
Prospective encounter-based data collected in Sheffield (n = 174) was used to establish whether annual review FEV were always collected during periods of clinical stability and to determine the group-level discrepancy between annual review vs best FEV . We then went on to quantify the group-level discrepancy between annual review and best annual FEV readings within the UK registry (n = 2995) to determine if the differences observed in Sheffield also apply to the wider UK data.
RESULTS
Sheffield results showed a group-level discrepancy between best and annual review FEV of -2.5% (95% CI -3.95% to -1.2%) for annual reviews performed during periods of clinical stability (n = 50). The group-level discrepancy is larger at -8.0% (95% CI -11.2% to -4.9%) among annual reviews performed during periods of clinical instability (n = 13). Therefore, the magnitude of this group-level discrepancy is a surrogate for the proportion of clinically stable annual reviews-smaller discrepancy indicates a higher proportion of clinically stable annual reviews and vice versa. The overall group-level discrepancy in the UK registry (-5.6%, 95% CI -5.9 to -5.4%) was similar to Sheffield (-6.1%, 95% CI -7.1 to -5.1%). Around 20% of the clinician reviewed, annual reviews in Sheffield were performed during periods of clinically instability.
CONCLUSIONS
Annual review FEV underestimates lung health of adults with CF in the UK and may bias cross-country comparisons.
背景、目的和目标：对囊性纤维化（CF）结果进行跨国比较可能会发现护理方面的差异，但这取决于数据质量。一个重要的假设是，英国的年度审查 FEV 仅在临床稳定期采集。如果这一假设不成立，FEV 比较的结果可能会偏向基于就诊记录的 FEV 登记处。我们旨在检验以下假设，即在英国，CF 的年度检查仅在临床稳定期进行。
方法
我们使用谢菲尔德（n=174）前瞻性的基于就诊记录的数据来确定年度审查 FEV 是否总是在临床稳定期采集，并确定年度审查与最佳 FEV 之间的组间差异。然后，我们在英国登记处（n=2995）内量化年度审查与最佳年度 FEV 读数之间的组间差异，以确定谢菲尔德观察到的差异是否也适用于更广泛的英国数据。
结果
谢菲尔德的结果显示，在临床稳定期进行的年度审查中，最佳 FEV 和年度审查 FEV 之间存在组间差异为-2.5%（95%置信区间为-3.95%至-1.2%）（n=50）。在临床不稳定期进行的年度审查中，组间差异更大，为-8.0%（95%置信区间为-11.2%至-4.9%）（n=13）。因此，这种组间差异的大小是临床稳定年度审查比例的替代指标——差异越小，临床稳定年度审查的比例越高，反之亦然。英国登记处的总体组间差异为-5.6%（95%置信区间为-5.9%至-5.4%），与谢菲尔德相似（-6.1%，95%置信区间为-7.1%至-5.1%）。在谢菲尔德，大约 20%的接受审查的临床医生在临床不稳定期进行年度审查。
结论
英国 CF 成人年度审查 FEV 低估了肺部健康状况，可能会影响跨国比较。
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