Validity of self-reported information on cancer: Determinants of under- and over-reporting
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The first aim of the present study was to assess the validity of self-reported information concerning previous cancer. The second aim was to investigate determinants for under- and over-reporting of cancer. The Malmö Diet and Cancer Study is a prospective cohort study including 28,098 subjects. A questionnaire assessed lifestyle and medical conditions, e.g. previous cancer (yes/no). Cancer follow-up was made using the Swedish Cancer Registry (SCR). Questionnaire information concerning previous cancer was considered as test, and SCR information as golden standard (any tumour in the SCR, and specific sites were investigated). The validity analysis assessed agreement, sensitivity and specificity. Under- and over-reporting were studied in relation to lifestyle and socio-demographic factors. Sensitivity of the questionnaire in relation to malignant tumours was 0.82. It was 0.53 when cancer in situ of the breast and uterine cervix together with benign lesions of the urinary bladder and the nervous system were included in the cancer definition. Under- and over-reporting (in relation to malignant tumours) were more common among women and old people. Obesity, size of household, place of birth, smoking, social participation, educational level, type of employment, alcohol consumption and poor well-being was associated with under- or over-reporting in relation to at least one of the studied endpoints in either men or women. We conclude that there was a considerable disagreement between self-reported information and cancer registry data.
- Harlow SD, Linet MS. Agreement between questionnaire data and medical records. The evidence for accuracy of recall. Am J Epidemiol 1989; 129: 233-248.
- Colditz GA, Martin P, Stampfer MJ, et al. Validation of questionnaire information on risk factors and disease outcomes in a prospective cohort study of women. Am J Epidemiol 1986; 123: 894-900.
- Paganini-Hill A, Chao A. Accuracy of recall of hip fracture, heart attack, and cancer: A comparison of postal survey data and medical records. Am J Epidemiol 1993; 138: 101-106.
- Bergmann MM, Byers T, Freedman DS, et al. Validity of self-reported diagnoses leading to hospitalization: A comparison of self-reports with hospital records in a prospective study of American adults. Am J Epidemiol 1998; 147: 969-977.
- Zhu K, McKnight B, Stergachis A, et al. Comparison of self-report data and medical records data: Results from a case-control study on prostate cancer. Int J Epidemiol 1999; 28:409-417.
- Berthier F, Grosclaude P, Bocquet H, et al. Prevalence of cancer in the elderly: Discrepancies between self-reported and registry data. Br J Cancer 1997; 75: 445-447.
- Bergmann MM, Calle EE, Mervis CA, et al. Validity of self-reported cancers in a prospective cohort study in comparison with data from state cancer registries. Am J Epidemiol 1998; 147: 556-562.
- Desai M, Bruce M, Desai R, et al. Validity of self-reported cancer history: A comparison of health interview data and cancer registry records. Am J Epidemiol 2001; 153: 299-306.
- Manjer J, Carlsson S, Elmståhl S, et al. The Malmö Diet and Cancer Study: Representativity, cancer incidence and mortality in participants and non-participants. Eur J Cancer Prev 2001; 10: 489-499.
- The National Board of Health and Welfare. Cancer incidence in Sweden 1996. Stockholm, Sweden: The National Board of Health and Welfare, 1998.
- Berglund G, Elmståhl S, Janzon L, et al. The Malmö Diet and Cancer Study-design and feasibility. J Int Med 1993; 233: 45-51.
- Riboli E. Nutrition and cancer: Background and rationale of the European Prospective Investigation into Cancer and Nutrition (EPIC). Ann Oncol 1992; 3: 783-791.
- Manjer J, Elmståhl S, Janzon L, et al. Invitation to a population-based cohort study: Differences between subjects recruited using various strategies. Scand J Public Health 2002; 30: 103-112.
- EPIC. Guidelines for collection of end-point data in The EPIC Study. Lyon, France: IARC, 1998.
- Garne JP. Invasive breast cancer in Malmö 1961-1992-An epidemiological study. Malmö, Sweden: Lund University, 1996.
- The National Board of Health and Welfare. Cancer incidence in Sweden 1999. Stockholm, Sweden: The National Board of Health and Welfare, 2001.
- Schrijvers CT, Stronks K, van de Mheen DH, et al. Validation of cancer prevalence data from a postal survey by comparison with cancer registry records. Am J Epidemiol 1994; 139: 408-414.
- Chambers LW, Spitzer WO, Hill GB, et al. Underreporting of cancer in medical surveys: A source of systematic error in cancer research. Am J Epidemiol 1976; 104: 141-145.
- Holland JC, Geary N, Marchini A, et al. An international survey of physician attitudes and practice in regard to revealing the diagnosis of cancer. Cancer Invest 1987; 5: 151-154.
- Elwyn TS, Fetters MD, Gorenflo W, et al. Cancer disclosure in Japan: Historical comparisons, current practices. Soc Sci Med 1998; 46: 1151-1163.
- Estape J, Palombo H, Hernandez E, et al. Cancer diagnosis disclosure in a Spanish hospital. Ann Oncol 1992; 3: 451-454.
- Goldberg RJ. Disclosure of information to adult cancer patients: Issues and update. J Clin Oncol 1984; 2: 948-955.
- Greene MG, Adelman RD, Charon R, et al. Concordance between physicians and their older and younger patients in the primary care medical encounter. Gerontologist 1989; 29: 808-813.
- Root MJ. Communication barriers between older women and physicians. Public Health Rep 1987; Suppl: 152-155.
- Validity of self-reported information on cancer: Determinants of under- and over-reporting
European Journal of Epidemiology
Volume 19, Issue 3 , pp 239-247
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