The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study

Therese M-L Andersson; Tor Åge Myklebust; Mark J Rutherford; Bjørn Møller; Isabelle Soerjomataram; Melina Arnold; Freddie Bray; D Max Parkin; Peter Sasieni; Oliver Bucher; Prithwish De; Gerda Engholm; Anna Gavin; Alana Little; Geoff Porter; Agnihotram V Ramanakumar; Nathalie Saint-Jacques; Paul M Walsh; Ryan R Woods; Paul C Lambert

doi:10.1016/j.canep.2020.101881

The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study

Therese M-L Andersson, Tor Åge Myklebust, Mark J Rutherford, Bjørn Møller, Isabelle Soerjomataram, Melina Arnold, Freddie Bray, D Max Parkin, Peter Sasieni, Oliver Bucher, Prithwish De, Gerda Engholm, Anna Gavin, Alana Little, Geoff Porter, Agnihotram V Ramanakumar, Nathalie Saint-Jacques, Paul M Walsh, Ryan R Woods, Paul C Lambert

Queen's University Belfast

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Abstract

BACKGROUND: Population-based cancer registries strive to cover all cancer cases diagnosed within the population, but some cases will always be missed and no register is 100 % complete. Many cancer registries use death certificates to identify additional cases not captured through other routine sources, to hopefully add a large proportion of the missed cases. Cases notified through this route, who would not have been captured without death certificate information, are referred to as Death Certificate Initiated (DCI) cases. Inclusion of DCI cases in cancer registries increases completeness and is important for estimating cancer incidence. However, inclusion of DCI cases will generally lead to biased estimates of cancer survival, but the same is often also true if excluding DCI cases. Missed cases are probably not a random sample of all cancer cases, but rather cases with poor prognosis. Further, DCI cases have poorer prognosis than missed cases in general, since they have all died with cancer mentioned on the death certificates.

METHODS: We performed a simulation study to estimate the impact of including or excluding DCI cases on cancer survival estimates, under different scenarios.

RESULTS: We demonstrated that including DCI cases underestimates survival. The exclusion of DCI cases gives unbiased survival estimates if missed cases are a random sample of all cancer cases, while survival is overestimated if these have poorer prognosis.

CONCLUSION: In our most extreme scenarios, with 25 % of cases initially missed, the usual practice of including DCI cases underestimated 5-year survival by at most 3 percentage points.

Original language	English
Pages (from-to)	101881
Journal	Cancer Epidemiology
Volume	71
Issue number	Pt A
Early online date	10 Jan 2021
DOIs	https://doi.org/10.1016/j.canep.2020.101881
Publication status	Early online date - 10 Jan 2021

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The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study
Copyright 2021 Elsevier. This manuscript is distributed under a Creative Commons Attribution-NonCommercial-NoDerivs License (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits distribution and reproduction for non-commercial purposes, provided the author and source are cited.
Accepted author manuscript, 483 KBLicence: CC BY-NC-ND

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Andersson, T. M.-L., Myklebust, T. Å., Rutherford, M. J., Møller, B., Soerjomataram, I., Arnold, M., Bray, F., Parkin, D. M., Sasieni, P., Bucher, O., De, P., Engholm, G., Gavin, A., Little, A., Porter, G., Ramanakumar, A. V., Saint-Jacques, N., Walsh, P. M., Woods, R. R., & Lambert, P. C. (2021). The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study. Cancer Epidemiology, 71(Pt A), 101881. Advance online publication. https://doi.org/10.1016/j.canep.2020.101881

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title = "The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study",

abstract = "BACKGROUND: Population-based cancer registries strive to cover all cancer cases diagnosed within the population, but some cases will always be missed and no register is 100 % complete. Many cancer registries use death certificates to identify additional cases not captured through other routine sources, to hopefully add a large proportion of the missed cases. Cases notified through this route, who would not have been captured without death certificate information, are referred to as Death Certificate Initiated (DCI) cases. Inclusion of DCI cases in cancer registries increases completeness and is important for estimating cancer incidence. However, inclusion of DCI cases will generally lead to biased estimates of cancer survival, but the same is often also true if excluding DCI cases. Missed cases are probably not a random sample of all cancer cases, but rather cases with poor prognosis. Further, DCI cases have poorer prognosis than missed cases in general, since they have all died with cancer mentioned on the death certificates.METHODS: We performed a simulation study to estimate the impact of including or excluding DCI cases on cancer survival estimates, under different scenarios.RESULTS: We demonstrated that including DCI cases underestimates survival. The exclusion of DCI cases gives unbiased survival estimates if missed cases are a random sample of all cancer cases, while survival is overestimated if these have poorer prognosis.CONCLUSION: In our most extreme scenarios, with 25 % of cases initially missed, the usual practice of including DCI cases underestimated 5-year survival by at most 3 percentage points.",

author = "Andersson, {Therese M-L} and Myklebust, {Tor {\AA}ge} and Rutherford, {Mark J} and Bj{\o}rn M{\o}ller and Isabelle Soerjomataram and Melina Arnold and Freddie Bray and Parkin, {D Max} and Peter Sasieni and Oliver Bucher and Prithwish De and Gerda Engholm and Anna Gavin and Alana Little and Geoff Porter and Ramanakumar, {Agnihotram V} and Nathalie Saint-Jacques and Walsh, {Paul M} and Woods, {Ryan R} and Lambert, {Paul C}",

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year = "2021",

month = jan,

day = "10",

doi = "10.1016/j.canep.2020.101881",

language = "English",

volume = "71",

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Andersson, TM-L, Myklebust, TÅ, Rutherford, MJ, Møller, B, Soerjomataram, I, Arnold, M, Bray, F, Parkin, DM, Sasieni, P, Bucher, O, De, P, Engholm, G, Gavin, A, Little, A, Porter, G, Ramanakumar, AV, Saint-Jacques, N, Walsh, PM, Woods, RR & Lambert, PC 2021, 'The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study', Cancer Epidemiology, vol. 71, no. Pt A, pp. 101881. https://doi.org/10.1016/j.canep.2020.101881

TY - JOUR

T1 - The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study

AU - Andersson, Therese M-L

AU - Myklebust, Tor Åge

AU - Rutherford, Mark J

AU - Møller, Bjørn

AU - Soerjomataram, Isabelle

AU - Arnold, Melina

AU - Bray, Freddie

AU - Parkin, D Max

AU - Sasieni, Peter

AU - Bucher, Oliver

AU - De, Prithwish

AU - Engholm, Gerda

AU - Gavin, Anna

AU - Little, Alana

AU - Porter, Geoff

AU - Ramanakumar, Agnihotram V

AU - Saint-Jacques, Nathalie

AU - Walsh, Paul M

AU - Woods, Ryan R

AU - Lambert, Paul C

PY - 2021/1/10

Y1 - 2021/1/10

N2 - BACKGROUND: Population-based cancer registries strive to cover all cancer cases diagnosed within the population, but some cases will always be missed and no register is 100 % complete. Many cancer registries use death certificates to identify additional cases not captured through other routine sources, to hopefully add a large proportion of the missed cases. Cases notified through this route, who would not have been captured without death certificate information, are referred to as Death Certificate Initiated (DCI) cases. Inclusion of DCI cases in cancer registries increases completeness and is important for estimating cancer incidence. However, inclusion of DCI cases will generally lead to biased estimates of cancer survival, but the same is often also true if excluding DCI cases. Missed cases are probably not a random sample of all cancer cases, but rather cases with poor prognosis. Further, DCI cases have poorer prognosis than missed cases in general, since they have all died with cancer mentioned on the death certificates.METHODS: We performed a simulation study to estimate the impact of including or excluding DCI cases on cancer survival estimates, under different scenarios.RESULTS: We demonstrated that including DCI cases underestimates survival. The exclusion of DCI cases gives unbiased survival estimates if missed cases are a random sample of all cancer cases, while survival is overestimated if these have poorer prognosis.CONCLUSION: In our most extreme scenarios, with 25 % of cases initially missed, the usual practice of including DCI cases underestimated 5-year survival by at most 3 percentage points.

AB - BACKGROUND: Population-based cancer registries strive to cover all cancer cases diagnosed within the population, but some cases will always be missed and no register is 100 % complete. Many cancer registries use death certificates to identify additional cases not captured through other routine sources, to hopefully add a large proportion of the missed cases. Cases notified through this route, who would not have been captured without death certificate information, are referred to as Death Certificate Initiated (DCI) cases. Inclusion of DCI cases in cancer registries increases completeness and is important for estimating cancer incidence. However, inclusion of DCI cases will generally lead to biased estimates of cancer survival, but the same is often also true if excluding DCI cases. Missed cases are probably not a random sample of all cancer cases, but rather cases with poor prognosis. Further, DCI cases have poorer prognosis than missed cases in general, since they have all died with cancer mentioned on the death certificates.METHODS: We performed a simulation study to estimate the impact of including or excluding DCI cases on cancer survival estimates, under different scenarios.RESULTS: We demonstrated that including DCI cases underestimates survival. The exclusion of DCI cases gives unbiased survival estimates if missed cases are a random sample of all cancer cases, while survival is overestimated if these have poorer prognosis.CONCLUSION: In our most extreme scenarios, with 25 % of cases initially missed, the usual practice of including DCI cases underestimated 5-year survival by at most 3 percentage points.

U2 - 10.1016/j.canep.2020.101881

DO - 10.1016/j.canep.2020.101881

M3 - Article

C2 - 33440295

SN - 1877-7821

VL - 71

SP - 101881

JO - Cancer Epidemiology

JF - Cancer Epidemiology

IS - Pt A

ER -

The impact of excluding or including Death Certificate Initiated (DCI) cases on estimated cancer survival: A simulation study

Abstract

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