Quality measures of the population-based Finnish Cancer Registry indicate sound data quality for solid malignant tumours

European Journal of Cancer

Volumn 77, Issue , 2017, Pages 31-39

  Leinonen, Maarit K ^a   Miettinen, Joonas ^a   Heikkinen, Sanna ^a   Pitkäniemi, Janne ^a   Malila, Nea ^a  

^a FINNISH CANCER REGISTRY   (Finland)

Author keywords

Accuracy; Cancer registry; Comparabality; Completeness; Data quality; Incidence; Population based; Reporting; Timeliness; Validity

Indexed keywords

ADOLESCENT; ANUS CANCER; ARTICLE; BLADDER CANCER; BONE CANCER; BREAST CANCER; CANCER EPIDEMIOLOGY; CANCER INCIDENCE; CANCER LOCALIZATION; CANCER PATIENT; CANCER REGISTRY; CENTRAL NERVOUS SYSTEM CANCER; CHILD; CHILDHOOD CANCER; COLORECTAL CANCER; CUTANEOUS MELANOMA; DEATH CERTIFICATE; DIGESTIVE SYSTEM CANCER; ENDOCRINE CANCER; EYE CANCER; FEMALE; FEMALE GENITAL TRACT CANCER; FINLAND; HEAD AND NECK CANCER; HEMATOLOGIC MALIGNANCY; HISTOLOGY; HODGKIN DISEASE; HOSPITAL ADMISSION; HUMAN; ICD-O-3; INFANT; KIDNEY CANCER; LEUKEMIA; LYMPHOPROLIFERATIVE DISEASE; MAJOR CLINICAL STUDY; MALE; MALE GENITAL TRACT CANCER; MYELODYSPLASTIC SYNDROME; MYELOMA; MYELOPROLIFERATIVE NEOPLASM; NEWBORN; NON MELANOMA SKIN CANCER; NONHODGKIN LYMPHOMA; OUTPATIENT; PLASMACYTOMA; POPULATION RESEARCH; PRESCHOOL CHILD; PRIORITY JOURNAL; QUALITY CONTROL; QUANTITATIVE ANALYSIS; RESPIRATORY TRACT CARCINOMA; SCHOOL CHILD; SOFT TISSUE CANCER; SOLID MALIGNANT NEOPLASM; THYROID CANCER; UPPER GASTROINTESTINAL TRACT; URINARY TRACT CANCER; VALIDITY; ADULT; AGE DISTRIBUTION; AGED; INCIDENCE; MEASUREMENT ACCURACY; METASTASIS; MIDDLE AGED; NEOPLASMS; REGISTER; SEX RATIO; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGE DISTRIBUTION; AGED; AGED, 80 AND OVER; CHILD; CHILD, PRESCHOOL; DATA ACCURACY; FEMALE; FINLAND; HUMANS; INCIDENCE; INFANT; INFANT, NEWBORN; MALE; MIDDLE AGED; NEOPLASM METASTASIS; NEOPLASMS; REGISTRIES; SEX DISTRIBUTION; YOUNG ADULT;

EID: 85018339503     PISSN: 09598049     EISSN: 18790852     Source Type: Journal    
DOI: 10.1016/j.ejca.2017.02.017     Document Type: Article

References (33)

1. [1] Ministry of Social Affairs and Health, Act on national personal records kept under the health care system [Finnish]. Jan 9, 1989 Laki terveydenhuollon valtakunnallisista henkilörekistereistä [Internet]. 556/1989. Available from: http://www.finlex.fi/fi/laki/smur/1989/19890556.
2. [2] Andersen, M.R., Storm, H.H., Cancer registration, public health and the reform of the European data protection framework: abandoning or improving European public health research?. Eur J Cancer 51:9 (2015 Jun), 1028–1038.
3. [3] Teppo, L., Pukkala, E., Lehtonen, M., Data quality and quality control of a population-based cancer registry. Experience in Finland. Acta Oncol Stockh Swed 33:4 (1994), 365–369.
4. [4] Lönnberg, S., Leinonen, M., Malila, N., Anttila, A., Validation of histological diagnoses in a national cervical screening register. Acta Oncol 51:1 (2012 Jan), 37–44.
5. [5] Larsen, I.K., Småstuen, M., Johannesen, T.B., Langmark, F., Parkin, D.M., Bray, F., et al. Data quality at the Cancer Registry of Norway: an overview of comparability, completeness, validity and timeliness. Eur J Cancer Oxf Engl 1990 45:7 (2009 May), 1218–1231.
6. [6] Sigurdardottir, L.G., Jonasson, J.G., Stefansdottir, S., Jonsdottir, A., Olafsdottir, G.H., Olafsdottir, E.J., et al. Data quality at the Icelandic Cancer Registry: comparability, validity, timeliness and completeness. Acta Oncol 51:7 (2012 Sep), 880–889.
7. [7] Forman, D., Bray, F., Brewster, D.H., Gombe Mbalawa, C., Kohler, B., Pineros, M., et al. Cancer incidence in five continents, Vol. X [Internet]. 2013, International Agency for Research on Cancer, Lyon [cited 2016 Sep 28]. Available from: http://ci5.iarc.fr.
8. [8] Bray, F., Parkin, D.M., Evaluation of data quality in the cancer registry: principles and methods. Part I comparability, validity and timeliness. Eur J Cancer Oxf Engl 1990 45:5 (2009 Mar), 747–755.
9. [9] Bray, F., Ferlay, J., Laversanne, M., Brewster, D.H., Gombe Mbalawa, C., Kohler, B., et al. Cancer incidence in five continents: inclusion criteria, highlights from volume X and the global status of cancer registration. Int J Cancer 137:9 (2015 Nov 1), 2060–2071.
10. [10] Parkin, D.M., Bray, F., Evaluation of data quality in the cancer registry: principles and methods Part II. Completeness. Eur J Cancer 45:5 (2009 Mar), 756–764.
11. [11] Engholm G, Ferlay J, Christensen N, Kejs AMT, Hertzum-Larsen R, Johannesen TB, Khan S, Leinonen MK, Ólafsdóttir E, Petersen T, Schmidt LKH, Trykker H, Storm HH. NORDCAN: cancer incidence, mortality, prevalence and survival in the Nordic countries, version 7.3 (8.7.2016). In association of the Nordic cancer registries. Danish Cancer Society; [cited 2016 Sep 28]. Available from: http://www.ancr.nu.
12. [12] Sund, R., Quality of the Finnish hospital discharge register: a systematic review. Scand J Public Health 40:6 (2012 Aug 1), 505–515.
13. [13] Ferlay, J., Burkhard, C., Whelan, S., Parkin, D.M., Check and conversion programs for cancer registries (IARC/IACR Tools for Cancer Registries) [Internet]. Lyon., 2005 [cited 2016 Sep 28]. Report No.: IARC Technical Report No. 42. Available from: http://www.iacr.com.fr/images/doc/TechRep42.pdf.
14. [14] Fritz, A.G., (eds.) International classification of diseases for oncology: ICD-O, 3rd ed., 2000, World Health Organization, Geneva, 240.
15. [15] European Network of Cancer Registries, Tyczyński, J.E., Démaret, E., Parkin, D.M., World Health Organization, European Commission, et al. Standards and guidelines for cancer registration in Europe: the ENCR recommendations , vol. I, 2003, International Agency for Research on Cancer, Lyon.
16. [16] Thursfield, V., Giles, G., Farrugia, H., Cancer in Victoria: statistics & trends 2013, 2014, Cancer Council Victoria, Melbourne [cited 2016 Sep 28]. Available from: http://www.cancervic.org.au/downloads/cec/cancer-in-vic/ccv-statistics-trends-2013.pdf.
17. [17] Bradley, C.J., Clement, J.P., Lin, C., Absence of cancer diagnosis and treatment in elderly medicaid-insured nursing home residents. J Natl Cancer Inst 100:1 (2008 Jan 2), 21–31.
18. [18] Asch, S.M., Kerr, E.A., Keesey, J., Adams, J.L., Setodji, C.M., Malik, S., et al. Who is at greatest risk for receiving poor-quality health care?. N Engl J Med 354:11 (2006 Mar 16), 1147–1156.
19. [19] Kosiak, B., Sangl, J., Correa-de-Araujo, R., Quality of health care for older women: what do we know?. Womens Health Issues 16:2 (2006 Mar), 89–99.
20. [20] Zanetti, R., Schmidtmann, I., Sacchetto, L., Binder-Foucard, F., Bordoni, A., Coza, D., et al. Completeness and timeliness: cancer registries could/should improve their performance. Eur J Cancer 51:9 (2015 Jun), 1091–1098.
21. [21] Barlow, L., Westergren, K., Holmberg, L., Talbäck, M., The completeness of the Swedish Cancer Register—a sample survey for year 1998. Acta Oncol 48:1 (2009 Jan), 27–33.
22. [22] Dimitrova, N., Parkin, D.M., Data quality at the Bulgarian National Cancer Registry: an overview of comparability, completeness, validity and timeliness. Cancer Epidemiol 39:3 (2015 Jun), 405–413.
23. [23] Poder, J., Completeness of the Estonian cancer registry [Estonian] [Internet]. 2015, Tartu University, Tartu [cited 2016 Sep 28]. Available from: http://rahvatervis.ut.ee/bitstream/1/6086/1/P%C3%B5der2015.pdf.
24. [24] Kearney, T.M., Donnelly, C., Kelly, J.M., O'Callaghan, E.P., Fox, C.R., Gavin, A.T., Validation of the completeness and accuracy of the Northern Ireland Cancer Registry. Cancer Epidemiol 39:3 (2015 Jun), 401–404.
25. [25] Jegou, D., Penninckx, F., Vandendael, T., Bertrand, C., Van Eycken, E., Completeness and registration bias in PROCARE, a Belgian multidisciplinary project on cancer of the rectum with participation on a voluntary basis. Eur J Cancer 51:9 (2015 Jun), 1099–1108.
26. ® in Europe: from roots to fruits. Eur J Cancer 51:9 (2015 Jun), 1050–1063.
27. [27] Gustafsson, G., Kogner, P., Heyman, M., Childhood cancer incidence and survival in Sweden 1984–2010. Report 2013. [Internet]. Stockholm., 2013 [cited 2016 Sep 28]. (The Swedish Childhood Cancer Registry). Available from: https://www.cceg.ki.se/documents/ChildhoodCancerIncidenceandSurvivalinSweden1984_2010.pdf.
28. [28] Pritchard-Jones, K., Kaatsch, P., Steliarova-Foucher, E., Stiller, C.A., Coebergh, J.W.W., Cancer in children and adolescents in Europe: developments over 20 years and future challenges. Eur J Cancer 42:13 (2006 Sep), 2183–2190.
29. [29] Leinonen, M.K., Rantanen, M., Pitkäniemi, J., Malila, N., Coverage and accuracy of myeloproliferative and myelodysplastic neoplasms in the Finnish Cancer Registry. Acta Oncol 55:6 (2016 Jun 2), 782–786.
30. [30] Gavin, A., Rous, B., Marcos-Gragera, R., Middleton, R., Steliarova-Foucher, E., Maynadie, M., et al. Towards optimal clinical and epidemiological registration of haematological malignancies: guidelines for recording progressions, transformations and multiple diagnoses. Eur J Cancer 51:9 (2015 Jun), 1109–1122.
31. [31] Coebergh, J.W., van den Hurk, C., Rosso, S., Comber, H., Storm, H., Zanetti, R., et al. EUROCOURSE lessons learned from and for population-based cancer registries in Europe and their programme owners: improving performance by research programming for public health and clinical evaluation. Eur J Cancer 51:9 (2015 Jun), 997–1017.
32. [32] Lahti, R.A., Penttilä, A., Cause-of-death query in validation of death certification by expert panel; effects on mortality statistics in Finland, 1995. Forensic Sci Int 131:2–3 (2003 Jan 28), 113–124.
33. [33] Nilsson, M., Tavelin, B., Axelsson, B., A study of patients not registered in the Swedish cancer register but reported to the Swedish register of palliative care 2009 as deceased due to cancer. Acta Oncol 53:3 (2014 Mar), 414–419.