Top

Cancer Causes & Control

Published in:

01-01-2019 | Original paper

Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society’s studies of cancer survivors

Authors: Tracy M. Layne, Leah M. Ferrucci, Beth A. Jones, Tenbroeck Smith, Lou Gonsalves, Brenda Cartmel

Published in: Cancer Causes & Control | Issue 1/2019

Abstract

Purpose

To examine the concordance between cancer registry and self-reported data for race, Hispanic ethnicity, and cancer type in the American Cancer Society’s Studies of Cancer Survivors (SCS) I and II.

Methods

We calculated sensitivity, specificity, positive predictive value, and Kappa statistics for SCS-I and II. The gold standard for cancer type was registry data and for race and ethnicity was self-reported questionnaire data.

Results

Among 6,306 survivors in SCS-I and 9,170 in SCS-II, overall agreement (Kappa) for cancer type was 0.98 and 0.99, respectively. Concordance was strongest for breast and prostate cancer (Sensitivity ≥ 0.98 in SCS-I and II). For race, Kappa was 0.85 (SCS-I) and 0.93 (SCS-II), with strong concordance for white (Sensitivity = 0.95 in SCS-I and 0.99 in SCS-II) and black survivors (Sensitivity = 0.94 in SCS-I and 0.99 in SCS-II), but weak concordance for American Indian/Alaska Native (Sensitivity = 0.23 in SCS-I and 0.19 in SCS-II) and Asian/Pacific Islander survivors (Sensitivity = 0.43 in SCS-I and 0.87 in SCS-II). Agreement was moderate for Hispanic ethnicity (Kappa = 0.73 and 0.71; Sensitivity = 0.74 and 0.76, in SCS-I and SCS-II, respectively).

Conclusions

We observed strong concordance between cancer registry data and self-report for cancer type in this national sample. For race and ethnicity, however, concordance varied significantly, with the poorest concordances observed for American Indian/Alaska Native and Asian/Pacific Islander survivors. Ensuring accurate recording of race/ethnicity data in registries is crucial for monitoring cancer trends and addressing cancer disparities among cancer survivors.

Siegel RL, Miller KD, Jemal A (2016) Cancer statistics. CA Cancer J Clin 66(1):7–30. https://doi.org/10.3322/caac.21332 CrossRef

Kerber RA, Slattery ML (1997) Comparison of self-reported and database-linked family history of cancer data in a case-control study. Am J Epidemiol 146(3):244–248CrossRef

Zajacova A, Dowd JB, Schoeni RF, Wallace RB (2010) Consistency and precision of cancer reporting in a multiwave national panel survey. Popul Health Metr 8:20. https://doi.org/10.1186/1478-7954-8-20 CrossRefPubMedPubMedCentral

Murff HJ, Spigel DR, Syngal S (2004) Does this patient have a family history of cancer? An evidence-based analysis of the accuracy of family cancer history. JAMA 292(12):1480–1489. https://doi.org/10.1001/jama.292.12.1480 CrossRefPubMed

Lerro CC, Stein KD, Smith T, Virgo KS (2012) A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000–2011. J Cancer Surviv 6(2):115–145. https://doi.org/10.1007/s11764-012-0214-1 CrossRefPubMed

de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, Forsythe L, Scoppa S, Hachey M, Rowland JH (2013) Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer epidemiology, biomarkers & prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology 22 (4):561–570. https://doi.org/10.1158/1055-9965.EPI-12-1356

Smith BD, Smith GL, Hurria A, Hortobagyi GN, Buchholz TA (2009) Future of cancer incidence in the United States: burdens upon an aging, changing nation. J Clin Oncol 27(17):2758–2765. https://doi.org/10.1200/jco.2008.20.8983 CrossRefPubMed

Klein BE, Lee KE, Moss SE, Trentham-Dietz A, Klein R (2010) Self- and registry-reported cancer in a population-based longitudinal study. WMJ 109(5):261–266PubMedPubMedCentral

Abraham L, Geller BM, Yankaskas BC, Bowles EJ, Karliner LS, Taplin SH, Miglioretti DL (2009) Accuracy of self-reported breast cancer among women undergoing mammography. Breast Cancer Res Treat 118(3):583–592. https://doi.org/10.1007/s10549-009-0375-4 CrossRefPubMedPubMedCentral

10.

Parikh-Patel A, Allen M, Wright WE, California Teachers Study Steering C (2003) Validation of self-reported cancers in the California Teachers Study. Am J Epidemiol 157(6):539–545CrossRef

11.

Gupta V, Gu K, Chen Z, Lu W, Shu XO, Zheng Y (2011) Concordance of self-reported and medical chart information on cancer diagnosis and treatment. BMC Med Res Methodol 11:72. https://doi.org/10.1186/1471-2288-11-72 CrossRefPubMedPubMedCentral

12.

Bergmann MM, Calle EE, Mervis CA, Miracle-McMahill HL, Thun MJ, Heath CW (1998) Validity of self-reported cancers in a prospective cohort study in comparison with data from state cancer registries. Am J Epidemiol 147(6):556–562CrossRef

13.

Desai MM, Bruce ML, Desai RA, Druss BG (2001) Validity of self-reported cancer history: a comparison of health interview data and cancer registry records. Am J Epidemiol 153(3):299–306CrossRef

14.

Clegg LX, Reichman ME, Hankey BF, Miller BA, Lin YD, Johnson NJ, Schwartz SM, Bernstein L, Chen VW, Goodman MT, Gomez SL, Graff JJ, Lynch CF, Lin CC, Edwards BK (2007) Quality of race, Hispanic ethnicity, and immigrant status in population-based cancer registry data: implications for health disparity studies. Cancer Causes Control 18(2):177–187. https://doi.org/10.1007/s10552-006-0089-4 CrossRefPubMed

15.

Hampton JW (2012) Network for cancer control research in American Indians and Alaska Natives: a historical perspective. J Cancer Educ 27(1 Suppl):S4–S8. https://doi.org/10.1007/s13187-012-0335-2 CrossRefPubMed

16.

Gomez SL, Glaser SL (2006) Misclassification of race/ethnicity in a population-based cancer registry (United States). Cancer Causes Control 17(6):771–781. https://doi.org/10.1007/s10552-006-0013-y CrossRefPubMed

17.

Swallen KC, West DW, Stewart SL, Glaser SL, Horn-Ross PL (1997) Predictors of misclassification of Hispanic ethnicity in a population-based cancer registry. Ann Epidemiol 7(3):200–206CrossRef

18.

Ryerson AB, Eheman CR, Altekruse SF, Ward JW, Jemal A, Sherman RL, Henley SJ, Holtzman D, Lake A, Noone AM, Anderson RN, Ma J, Ly KN, Cronin KA, Penberthy L, Kohler BA (2016) Annual report to the nation on the status of Cancer, 1975–2012, featuring the increasing incidence of liver cancer. Cancer 122(9):1312–1337. https://doi.org/10.1002/cncr.29936 CrossRefPubMedPubMedCentral

19.

Mai PL, Garceau AO, Graubard BI, Dunn M, McNeel TS, Gonsalves L, Gail MH, Greene MH, Willis GB, Wideroff L (2011) Confirmation of family cancer history reported in a population-based survey. J Natl Cancer Inst 103(10):788–797. https://doi.org/10.1093/jnci/djr114 CrossRefPubMedPubMedCentral

20.

Schrijvers CT, Stronks K, van de Mheen DH, Coebergh JW, Mackenbach JP (1994) Validation of cancer prevalence data from a postal survey by comparison with cancer registry records. Am J Epidemiol 139(4):408–414CrossRef

21.

Navarro C, Chirlaque MD, Tormo MJ, Perez-Flores D, Rodriguez-Barranco M, Sanchez-Villegas A, Agudo A, Pera G, Amiano P, Dorronsoro M, Larranaga N, Quiros JR, Ardanaz E, Barricarte A, Martinez C, Sanchez MJ, Berenguer A, Gonzalez CA (2006) Validity of self reported diagnoses of cancer in a major Spanish prospective cohort study. J Epidemiol Community Health 60(7):593–599. https://doi.org/10.1136/jech.2005.039131 CrossRefPubMedPubMedCentral

22.

Sohn MW, Zhang H, Arnold N, Stroupe K, Taylor BC, Wilt TJ, Hynes DM (2006) Transition to the new race/ethnicity data collection standards in the Department of Veterans Affairs. Popul Health Metr 4(7):7. https://doi.org/10.1186/1478-7954-4-7 CrossRefPubMedPubMedCentral

23.

Office of Management and Budget (1997) Revisions to the standard for the classification of federal data on race and ethnicity. Fed Reg 62(210):58782–58790

24.

Frost F, Taylor V, Fries E (1992) Racial misclassification of Native Americans in a surveillance, epidemiology, and end results cancer registry. J Natl Cancer Inst 84(12):957–962CrossRef

25.

Patel DA, Knowles A, Schwartz AG, Schwartz K (2005) Evaluation of African-American and white racial classification in a surveillance, epidemiology, and end results cancer registry. Ethn Dis 15(4):713–719PubMed

26.

Hoopes MJ, Taualii M, Weiser TM, Brucker R, Becker TM (2010) Including self-reported race to improve cancer surveillance data for American Indians and Alaska Natives in Washington state. J Reg Manag 37(2):43–48

27.

Stewart SL, Swallen KC, Glaser SL, Horn-Ross PL, West DW (1999) Comparison of methods for classifying Hispanic ethnicity in a population-based cancer registry. Am J Epidemiol 149(11):1063–1071CrossRef

28.

Smith T, Stein KD, Mehta CC, Kaw C, Kepner JL, Buskirk T, Stafford J, Baker F (2007) The rationale, design, and implementation of the American Cancer Society’s studies of cancer survivors. Cancer 109(1):1–12. https://doi.org/10.1002/cncr.22387 CrossRefPubMed

29.

Hsieh MC, Pareti LA, Chen VW (2011) Using NAPIIA to improve the accuracy of Asian race codes in registry data. J Reg Manag 38(4):190–195

30.

Watson PF, Petrie A (2010) Method agreement analysis: a review of correct methodology. Theriogenology 73(9):1167–1179. https://doi.org/10.1016/j.theriogenology.2010.01.003 CrossRefPubMed

31.

Berthier F, Grosclaude P, Bocquet H, Faliu B, Cayla F, Machelard-Roumagnac M (1997) Prevalence of cancer in the elderly: discrepancies between self reported and registry data. Br J Cancer 75(3):445–447. https://doi.org/10.1038/bjc.1997.74 CrossRefPubMedPubMedCentral

32.

Stavrou E, Vajdic CM, Loxton D, Pearson SA (2011) The validity of self-reported cancer diagnoses and factors associated with accurate reporting in a cohort of older Australian women. Cancer Epidemiol 35(6):e75–e80. https://doi.org/10.1016/j.canep.2011.02.005 CrossRefPubMed

33.

Homan SG, Kayani N, Yun S (2016) Risk factors, preventive practices, and health care among breast cancer survivors, United States, 2010. Prev Chronic Dis 13:E09. https://doi.org/10.5888/pcd13.150377 CrossRefPubMedPubMedCentral

34.

Tarasenko Y, Chen C, Schoenberg N (2017) Self-reported physical activity levels of older cancer survivors: results from the 2014 national health interview survey. J Am Geriatr Soc 65(2):e39–e44. https://doi.org/10.1111/jgs.14589 CrossRefPubMed

35.

Liu B, Taioli E (2014) Associations between human papillomavirus and history of cancer among U.S. adults in the National Health and Nutrition Examination Survey (2003–2010). Br J Cancer 111(7):1448–1453. https://doi.org/10.1038/bjc.2014.414 CrossRefPubMedPubMedCentral

36.

Tarleton HP, Ryan-Ibarra S, Induni M (2014) Chronic disease burden among cancer survivors in the California Behavioral Risk Factor Surveillance System, 2009–2010. J Cancer Surviv 8(3):448–459. https://doi.org/10.1007/s11764-014-0350-x CrossRefPubMed

37.

Johnson JC, Soliman AS, Tadgerson D, Copeland GE, Seefeld DA, Pingatore NL, Haverkate R, Banerjee M, Roubidoux MA (2009) Tribal linkage and race data quality for American Indians in a state cancer registry. Am J Prev Med 36(6):549–554. https://doi.org/10.1016/j.amepre.2009.01.035 CrossRefPubMedPubMedCentral

38.

Espey DK, Wiggins CL, Jim MA, Miller BA, Johnson CJ, Becker TM (2008) Methods for improving cancer surveillance data in American Indian and Alaska Native populations. Cancer 113(5 Suppl):1120–1130. https://doi.org/10.1002/cncr.23724 CrossRefPubMed

39.

Gomez SL, Glaser SL, Kelsey JL, Lee MM (2004) Bias in completeness of birthplace data for Asian groups in a population-based cancer registry (United States). Cancer Causes Control 15(3):243–253. https://doi.org/10.1023/b:caco.0000024244.91775.64 CrossRefPubMed

40.

Swallen KC, Glaser SL, Stewart SL, West DW, Jenkins CN, McPhee SJ (1998) Accuracy of racial classification of Vietnamese patients in a population-based cancer registry. Ethn Dis 8(2):218–227PubMed

41.

Blumenthal D, Tavenner M (2010) The “meaningful use” regulation for electronic health records. New Engl J Med 363(6):501–504. https://doi.org/10.1056/NEJMp1006114 CrossRefPubMed

42.

Klinger EV, Carlini SV, Gonzalez I, Hubert SS, Linder JA, Rigotti NA, Kontos EZ, Park ER, Marinacci LX, Haas JS (2015) Accuracy of race, ethnicity, and language preference in an electronic health record. J Gen Intern Med 30(6):719–723. https://doi.org/10.1007/s11606-014-3102-8 CrossRefPubMed

43.

IOM (Institute of Medicine) (2009) Race, ethnicity, and language data: standardization for health care quality improvement. IOM (Institute of Medicine), Washington, DC

44.

Group NRaEW (2011) NAACCR guideline for enhancing hispanic/latino identification: revised NAACCR Hispanic/Latino identification algorithm. vol Hispanic/Latino identification: revised NAACCR Hispanic/Latino identification algorithm [NHIA v2.2.1]. Springfield

45.

Group NRaEW NAACCR Asian Pacific Islander Identification Algorithm [NAPIIA v1.2.1]. Springfield

46.

Colby SL, Ortman JM (2014) Projections of the size and composition of the U.S. population: 2014–2060

47.

Brawley OW (2016) Some thoughts on health surveillance data, race, and population categorization. CA Cancer J Clin 66(3):179–181. https://doi.org/10.3322/caac.21346 CrossRefPubMed

48.

Torre LA, Sauer AM, Chen MS Jr, Kagawa-Singer M, Jemal A, Siegel RL (2016) Cancer statistics for Asian Americans, Native Hawaiians, and Pacific Islanders, 2016: converging incidence in males and females. CA Cancer J Clin 66(3):182–202. https://doi.org/10.3322/caac.21335 CrossRefPubMedPubMedCentral

Title: Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society’s studies of cancer survivors
Authors: Tracy M. Layne
Leah M. Ferrucci
Beth A. Jones
Tenbroeck Smith
Lou Gonsalves
Brenda Cartmel
Publication date: 01-01-2019
Publisher: Springer International Publishing
Published in: Cancer Causes & Control / Issue 1/2019
Print ISSN: 0957-5243
Electronic ISSN: 1573-7225
DOI: https://doi.org/10.1007/s10552-018-1091-3

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

At a glance: The STEP trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2019

Maternal reproductive hormones and angiogenic factors in pregnancy and subsequent breast cancer risk

Pre- and perinatal factors and incidence of breast cancer in the Black Women’s Health Study

Habitual recreational physical activity is associated with significantly improved survival in cancer patients: evidence from the Roswell Park Data Bank and BioRepository

Comparability of serum, plasma, and urinary estrogen and estrogen metabolite measurements by sex and menopausal status

Potential protein markers for breast cancer recurrence: a retrospective cohort study

Interplay between exercise and BMI; results from an equal access, racially diverse biopsy study

Keynote webinar | Spotlight on antibody–drug conjugates in cancer