Is hospital discharge administrative data an appropriate source of information for cancer registries purposes? Some insights from four Spanish registries

Abstract

BackgroundThe use of hospital discharge administrative data (HDAD) has been recommended for automating, improving, even substituting, population-based cancer registries. The frequency of false positive and false negative cases recommends local validation.MethodsThe aim of this study was to detect newly diagnosed, false positive and false negative cases of cancer from hospital discharge claims, using four Spanish population-based cancer registries as the gold standard. Prostate cancer was used as a case study.ResultsA total of 2286 incident cases of prostate cancer registered in 2000 were used for validation. In the most sensitive algorithm (that using five diagnostic codes), estimates for Sensitivity ranged from 14.5% (CI95% 10.3-19.6) to 45.7% (CI95% 41.4-50.1). In the most predictive algorithm (that using five diagnostic and five surgical codes) Positive Predictive Value estimates ranged from 55.9% (CI95% 42.4-68.8) to 74.3% (CI95% 67.0-80.6). The most frequent reason for false positive cases was the number of prevalent cases inadequately considered as newly diagnosed cancers, ranging from 61.1% to 82.3% of false positive cases. The most frequent reason for false negative cases was related to the number of cases not attended in hospital settings. In this case, figures ranged from 34.4% to 69.7% of false negative cases, in the most predictive algorithm.ConclusionsHDAD might be a helpful tool for cancer registries to reach their goals. The findings suggest that, for automating cancer registries, algorithms combining diagnoses and procedures are the best option. However, for cancer surveillance purposes, in those cancers like prostate cancer in which care is not only hospital-based, combining inpatient and outpatient information will be required.

Hospital discharge diagnostic and procedure codes for upper gastro-intestinal cancer: how accurate are they?

“…Previous validation studies examining breast and prostate cancer diagnoses have also shown surgical procedure records in administrative data to be well reported both in New South Wales [7,20] and internationally [29,30]. Nevertheless, true incident cancer cases and procedures from administrative data are still under-reported [31,32] and hence linkage with other datasets, such as registry-based data is recommended for case-ascertainment. Conversely, using hospital discharge data as the source for detecting incident upper GI cancer will over-estimate the incident rate, as false-positives are reported.…”

Evaluation of algorithms to identify incident cancer cases by using French health administrative databases

“…Many studies have developed methods to identify incident cancers by using health administrative databases . However, given that no ‘date of diagnosis’ variable exists in these databases, the main difficulty remains in the ability to distinguish between prevalent and incident cases, a key issue for etiological cancer studies.…”

Using hospital discharge data to identify incident pregnancy-associated cancers: a validation study

“…In accordance with literature, the common reasons for false positives were prevalent cancers or misclassification of cancer type [4]. We were unable to evaluate the underlying causes of false-negative cancers as information on the source of cancer diagnosis was not available.…”

“…We were unable to evaluate the underlying causes of false-negative cancers as information on the source of cancer diagnosis was not available. Others have speculated that the false-negative (missed) cancers may be due to cancers notified from death certificate or other non hospital-based institutions [4]. In our obstetric population the high proportion of in-situ/localised cancers suggests outpatient cancer management may be an important reason for false negatives.…”

“…Importantly, there is a complete registration of cancers in the NSW statutory data collection, which provided the gold standard of identification of incident pregnancy-associated cancers without the need of an independent validation source. The linkage to cancer registry dating back to 1994 provided a unique opportunity to assess extensive history of cancer for identification of prevalent cancers and to mitigate their impact on the positive predictive values [4,5]. Unlike other studies which focused on specific cancers, our comparison of reporting characteristics was done overall and by cancer type, and accounted for women with multiple primary cancers in a pregnancy.…”