Subscribe to RSS
DOI: 10.3414/ME0559
How Do Cancer Registries in Europe Estimate Completeness of Registration?
Publication History
received:
04 April 2008
accepted:
20 March 2008
Publication Date:
17 January 2018 (online)
![](https://www.thieme-connect.de/media/10.1055-s-00035037/200903/lookinside/thumbnails/10-3414-me0559-1.jpg)
Summary
Objectives: Several methods for estimating completeness in cancer registries have been proposed. Little is known about their relative merits. Before embarking on a systematic comparison of methods we wanted to know which indicators were currently in use and whether there had been comparative investigations of estimation methods.
Methods: We performed a survey among European cancer registries asking which methods for estimating completeness they used and whether they had performed comparisons of methods.
Results: One hundred and ninety-five European cancer registries were contacted after identification using membership directories of the European Network of Cancer Registries (ENCR) and of the International Association of Cancer Registries (IACR). Fifty-six (29%; 22%–36%) of the 195 cancer registries replied. Forty-eight (86%; 74%–94%) of these stated that they estimated completeness. Thirty-five (73%; 58%–85%) used historic comparisons, 31 (65%; 49%–78%) compared their data with a reference registry, 28 (58%; 43%–72%) registries used mortality incidence ratio. Capture-recapture methods were applied in only 12 (25%; 14%-40%) registries. The flow method was used by ten (21%; 10%–35%) registries. There were regional differences in the use of methods. Comparisons of methods were rare and usually restricted to real data at hand. A systematic comparison including all indicators actually in use in cancer registries was not reported.
Conclusions: A comparison of methods under well defined realistic conditions seems to be indicated. Unifying the methods for estimating completeness would improve validity of comparisons between cancer registries.
-
References
- 1 Parkin DM, Chen VW, Ferlay J, Galceran J, Storm HH, Whelan SL. Comparability and Quality Control in Cancer Registration. Lyon: IARC Press; 1994
- 2 Robles SC, Marrett LD, Clarke EA, Risch HA. An application of capture-recapture methods to the estimation of completeness of cancer registration. J Clin Epidemiol 1988; 41 (05) 495-501.
- 3 Brenner H, Stegmaier C, Ziegler H. Estimating completeness of cancer registration in Saarland/ Germany with capture-recapture methods. Eur J Cancer 1994; 30A (11) 1659-1663.
- 4 Brenner H, Stegmaier C, Ziegler H. Estimating completeness of cancer registration: an empirical evaluation of the two source capture-recapture approach in Germany. J Epidemiol Community Health 1995; 49 (04) 426-430.
- 5 Berghold A, Stronegger WJ, Wernecke KD. A model and application for estimating completeness of registration. Methods Inf Med 2001; 40 (02) 122-126.
- 6 Schouten LJ, Straatman H, Kiemeney LA, Gimbrere CH, Verbeek AL. The capture-recapture method for estimation of cancer registry completeness: a useful tool?. Int J Epidemiol 1994; 23 (06) 1111-1116.
- 7 Tilling K. Capture-recapture methods – useful or misleading?. Int J Epidemiol 2001; 30 (01) 12-14.
- 8 Brenner H. Application of capture-recapture methods for disease monitoring: potential effects of imperfect record linkage. Methods Inf Med 1994; 33 (05) 502-506.
- 9 Bullard J, Coleman MP, Robinson D, Lutz JM, Bell J, Peto J. Completeness of cancer registration: a new method for routine use. Br J Cancer 2000; 82 (05) 1111-1116.
- 10 Haberland J, Bertz J, Görsch B, Schön D. Krebsinzidenzschätzungen für Deutschland mittels log-linearer Modelle. Gesundheitswesen 2001; 63 8–9 556-560.
- 11 Haberland J, Schön D, Bertz J, Görsch B. Vollzähligkeitsschätzungen von Krebsregisterdaten in Deutschland. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz 2003; 46 (09) 770-774.
- 12 Colonna M, Grosclaude P, Faivre J, Revzani A, Arveux P, Chaplain G. et al. Cancer registry data based estimation of regional cancer incidence: application to breast and colorectal cancer in French administrative regions. J Epidemiol Community Health 1999; 53 (09) 558-564.
- 13 Mattauch V. Strukturanalyse des Epidemiologischen Krebsregisters für den Regierungsbezirk Münster: Identifikation von Schwachstellen und Konzepte für eine kontinuierliche Qualitätssiche-rung. Münster: Inauguraldissertation. Medizinische Fakultät der Westfälischen Wilhelms-Universität Münster; 2005
- 14 Silcocks PB, Robinson D. Completeness of ascertainment by cancer registries: putting bounds on the number of missing cases. J Public Health 2004; 26 (02) 161-167.
- 15 Ajiki W, Tsukuma H, Oshima A. Index for evaluating completeness of registration in population-based cancer registries and estimation of registration rate at the Osaka Cancer Registry between 1966 and 1992 using this index (in Japanese). Nippon Koshu Eisei Zasshi 1998; 45 (10) 1011-1017.
- 16 Kamo K, Kaneko S, Satoh K, Yanagihara H, Mizuno S, Sobue T. A mathematical estimation of true cancer incidence using data from population-based cancer registries. Jpn J Clin Oncol 2007; 37 (02) 150-155.
- 17 Silcocks PB, Robinson D. Simulation modelling to validate the flow method for estimating completeness of case ascertainment by cancer registries. J Public Health 2007; 29 (04) 455-462.
- 18 Schmidtmann I. Estimating completeness in cancer registries – comparing capture-recapture methods in a simulation study. Biom J 2008; 50 (06) 1077-1092.
- 19 International Association of Cancer Registries.. IACR Membership List. International Association of Cancer Registries Homepage 2006 (cited 2006 Aug 9). Available from: URL: http://www.iacr.com.fr
- 20 Tyczynski JE, Demaret E, Parkin DM. Standards and Guidelines for cancer registration. Lyon: IARC Press; 2003
- 21 European Network of Cancer Registries. ENCR Membership List. European Network of Cancer Registries Homepage. 2006 (cited 2006 Aug 9). Available from: URL: http://www.encr.com.fr
- 22 UN Population Division.. Definition of Major Areas and Regions. UN Population Division Homepage. 2007 (cited 2007 Aug 10). Available from: URL: http://esa.un.org/unpp/index.asp?panel=5
- 23 Crocetti E, Miccinesi G, Paci E, Zappa M. An application of the two-source capture-recapture method to estimate the completeness of the Tuscany Cancer Registry, Italy 4. Eur J Cancer Prev 2001; 10 (05) 417-423.
- 24 Schouten LJ, Hoppener P, van den Brandt PA, Knottnerus JA, Jager JJ. Completeness of cancer registration in Limburg, The Netherlands. Int J Epidemiol 1993; 22 (03) 369-376.
- 25 Brewster DH, Crichton J, Harvey JC, Dawson G. Completeness of case ascertainment in a Scottish regional cancer registry for the year 1992. Public Health 1997; 111 (05) 339-343.
- 26 Lund E. Pilot study for the evaluation of completeness of reporting to the cancer registry. Incidence of Cancer in Norway 1978. Oslo: The Cancer Registry of Norway 1981 pp 11-14.
- 27 Helseth A, Langmark F, Mork SJ. Neoplasms of the central nervous system in Norway I. Quality control of the registration in the Norwegian Cancer Registry. APMIS 1988; 96 (11) 1002-1008.
- 28 Mork J, Thoresen S, Faye-Lund H, Langmark F, Glattre E. Head and neck cancer in Norway A study of the quality of the Cancer Registry of Norway’s data on head and neck cancer for the period 1953-1991. APMIS 1995; 103 (05) 375-382.
- 29 Harvei S, Tretli S, Langmark F. Quality of prostate cancer data in the cancer registry of Norway. Eur J Cancer 1996; 32A (01) 104-110.
- 30 Tingulstad S, Halvorsen T, Norstein J, Hagen B, Skjeldestad FE. Completeness and accuracy of registration of ovarian cancer in the cancer registry of Norway1. Int J Cancer 2002; 98 (06) 907-911.