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Central nervous system tumor registration in the Swedish Cancer Register and Inpatient Register between 1990 and 2014

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Tettamanti, Giorgio ; Ljung, Rickard ; Ahlbom, Anders ; Talbäck, Mats ; Lannering, Birgitta ; Mathiesen, Tiit ; Segerlind, Jenny Pettersson ; Feychting, Maria. / Central nervous system tumor registration in the Swedish Cancer Register and Inpatient Register between 1990 and 2014. I: Clinical Epidemiology. 2019 ; Bind 11. s. 81-92.

Bibtex

@article{5c40aa3f4147402d96017977454c2706,
title = "Central nervous system tumor registration in the Swedish Cancer Register and Inpatient Register between 1990 and 2014",
abstract = "Background: The Swedish Cancer Register (SCR) is characterized by excellent quality and completeness overall, but the quality of the reporting may vary according to tumor site and age, and may change over time. The aim of the current study was to investigate the completeness of the reporting of central nervous system (CNS) tumor cases to the SCR.Materials and methods: Individuals hospitalized for a CNS tumor between 1990 and 2014 were identified using the Inpatient Register; the proportion of identified cases that did not have any cancer diagnosis reported to the SCR was subsequently assessed.Results: Between 1990 and 2014, 58,698 individuals were hospitalized for a CNS tumor, and a large proportion of them did not have any cancer diagnosis reported to the SCR (26{\%}). This discrepancy was particularly pronounced for benign tumors and among elderly patients (over 30{\%}). It was substantially lower for malignant brain tumors among adults (10{\%}); moreover, no increase in the discrepancy between the two registers was observed in this group during the study period. Similar findings were found when assessing the concordance between the Cause of Death Register and the SCR. Among CNS tumor patients who were not reported to the SCR, a large proportion had only one hospital discharge diagnosis containing a CNS tumor (35{\%}) and were less likely to be found in the Outpatient Register, which indicates that a large proportion of patients may have received an erroneous diagnosis.Conclusion: While a large proportion of CNS tumor patients were not reported to the SCR, the discrepancy between the SCR and the Inpatient Register was relatively small for malignant brain tumors among adults and has remained stable throughout the study period. We do not recommend that data from the Inpatient Register are combined with the SCR to estimate CNS tumor incidence, without proper confirmation of the diagnoses, as a considerable proportion of CNS tumor diagnoses registered in the Inpatient Register is unlikely to reflect true CNS tumors.",
keywords = "Brain neoplasms, Central nervous system neoplasms, Registries, Sweden",
author = "Giorgio Tettamanti and Rickard Ljung and Anders Ahlbom and Mats Talb{\"a}ck and Birgitta Lannering and Tiit Mathiesen and Segerlind, {Jenny Pettersson} and Maria Feychting",
year = "2019",
doi = "10.2147/CLEP.S177683",
language = "English",
volume = "11",
pages = "81--92",
journal = "Clinical Epidemiology",
issn = "1179-1349",
publisher = "Dove Medical Press Ltd",

}

RIS

TY - JOUR

T1 - Central nervous system tumor registration in the Swedish Cancer Register and Inpatient Register between 1990 and 2014

AU - Tettamanti, Giorgio

AU - Ljung, Rickard

AU - Ahlbom, Anders

AU - Talbäck, Mats

AU - Lannering, Birgitta

AU - Mathiesen, Tiit

AU - Segerlind, Jenny Pettersson

AU - Feychting, Maria

PY - 2019

Y1 - 2019

N2 - Background: The Swedish Cancer Register (SCR) is characterized by excellent quality and completeness overall, but the quality of the reporting may vary according to tumor site and age, and may change over time. The aim of the current study was to investigate the completeness of the reporting of central nervous system (CNS) tumor cases to the SCR.Materials and methods: Individuals hospitalized for a CNS tumor between 1990 and 2014 were identified using the Inpatient Register; the proportion of identified cases that did not have any cancer diagnosis reported to the SCR was subsequently assessed.Results: Between 1990 and 2014, 58,698 individuals were hospitalized for a CNS tumor, and a large proportion of them did not have any cancer diagnosis reported to the SCR (26%). This discrepancy was particularly pronounced for benign tumors and among elderly patients (over 30%). It was substantially lower for malignant brain tumors among adults (10%); moreover, no increase in the discrepancy between the two registers was observed in this group during the study period. Similar findings were found when assessing the concordance between the Cause of Death Register and the SCR. Among CNS tumor patients who were not reported to the SCR, a large proportion had only one hospital discharge diagnosis containing a CNS tumor (35%) and were less likely to be found in the Outpatient Register, which indicates that a large proportion of patients may have received an erroneous diagnosis.Conclusion: While a large proportion of CNS tumor patients were not reported to the SCR, the discrepancy between the SCR and the Inpatient Register was relatively small for malignant brain tumors among adults and has remained stable throughout the study period. We do not recommend that data from the Inpatient Register are combined with the SCR to estimate CNS tumor incidence, without proper confirmation of the diagnoses, as a considerable proportion of CNS tumor diagnoses registered in the Inpatient Register is unlikely to reflect true CNS tumors.

AB - Background: The Swedish Cancer Register (SCR) is characterized by excellent quality and completeness overall, but the quality of the reporting may vary according to tumor site and age, and may change over time. The aim of the current study was to investigate the completeness of the reporting of central nervous system (CNS) tumor cases to the SCR.Materials and methods: Individuals hospitalized for a CNS tumor between 1990 and 2014 were identified using the Inpatient Register; the proportion of identified cases that did not have any cancer diagnosis reported to the SCR was subsequently assessed.Results: Between 1990 and 2014, 58,698 individuals were hospitalized for a CNS tumor, and a large proportion of them did not have any cancer diagnosis reported to the SCR (26%). This discrepancy was particularly pronounced for benign tumors and among elderly patients (over 30%). It was substantially lower for malignant brain tumors among adults (10%); moreover, no increase in the discrepancy between the two registers was observed in this group during the study period. Similar findings were found when assessing the concordance between the Cause of Death Register and the SCR. Among CNS tumor patients who were not reported to the SCR, a large proportion had only one hospital discharge diagnosis containing a CNS tumor (35%) and were less likely to be found in the Outpatient Register, which indicates that a large proportion of patients may have received an erroneous diagnosis.Conclusion: While a large proportion of CNS tumor patients were not reported to the SCR, the discrepancy between the SCR and the Inpatient Register was relatively small for malignant brain tumors among adults and has remained stable throughout the study period. We do not recommend that data from the Inpatient Register are combined with the SCR to estimate CNS tumor incidence, without proper confirmation of the diagnoses, as a considerable proportion of CNS tumor diagnoses registered in the Inpatient Register is unlikely to reflect true CNS tumors.

KW - Brain neoplasms

KW - Central nervous system neoplasms

KW - Registries

KW - Sweden

UR - http://www.scopus.com/inward/record.url?scp=85062707137&partnerID=8YFLogxK

U2 - 10.2147/CLEP.S177683

DO - 10.2147/CLEP.S177683

M3 - Journal article

VL - 11

SP - 81

EP - 92

JO - Clinical Epidemiology

JF - Clinical Epidemiology

SN - 1179-1349

ER -

ID: 58586352