Abstract
Self-administered questionnaires are commonly used to measure exposures and outcomes in epidemiological research and thus need good validity. With increasing numbers of cancer survivors, there is interest in the ongoing assessment of therapy-related complications. A medical record validation of patient-reported complications following bone marrow transplantation (BMT) was performed using a self-administered questionnaire. The study population consisted of 100 patients who had undergone BMT at the City of Hope. The following self-reported complications were validated using medical records: ocular, endocrine, cardiovascular, musculoskeletal, pulmonary, gastrointestinal, neurological, graft-versus-host disease, and subsequent cancers. Using information from medical records as the standard, sensitivities ranged from 52.9% for subsequent cancers to 100% for avascular necrosis and hypothyroidism. Specificities ranged from 75.4% for ocular complications to 100% for avascular necrosis. There was intermediate to excellent agreement (kappa = 0.4–1.0) for all complications evaluated. Thus, the agreement between self-reporting and medical records was good for complications with clear diagnostic criteria that are easily communicated to the patient, but was diminished for complications with non-established diagnostic criteria (xerophthalmia) or a fluctuating course (peripheral neuropathies and hypertension). Overall these results suggest that cancer survivors can self-report serious complications with an acceptable level of accuracy in epidemiological research. Bone Marrow Transplantation (2000) 25, 1191–1196.
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References
Haapanen N, Miilunpalo S, Pasanen M et al. Agreement between questionnaire data and medical records of chronic diseases in middle-aged and elderly Finnish men and women Am J Epidemiol 1997 145: 762–769
Chisholm EM, de Dombal FT, Giles GR . Validation of a self administered questionnaire to elicit gastrointestinal symptoms Br Med J 1985 290: 1795–1796
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
Aitken J, Bain C, Ward M et al. How accurate is self-reported family history of colorectal cancer? Am J Epidemiol 1995 141: 863–871
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
Bergmann MM, Calle EE, Mervis CA et al. Validation of self-reported cancers in a prospective cohort study in comparison with data from state cancer registries Am J Epidemiol 1998 147: 556–562
Olson JE, Shu XO, Ross JA et al. Medical record validation of maternally reported birth characteristics and pregnancy-related events: a report from the Children's Cancer Group Am J Epidemiol 1997 145: 58–67
Hewitt M, Breen N, Devesa S . Cancer prevalence and survivorship issues: analyses of the 1992 National Health Interview Study J Natl Cancer Inst 1999 91: 1480–1486
Singhal S, Powles R, Treleaven J et al. Long-term outcome of adult acute leukemia patients who are alive and well 2 years after autologous blood or marrow transplantation Bone Marrow Transplant 1999 23: 875–879
Singhal S, Powles R, Treleaven J et al. Long-term outcome of adult acute leukemia patients who are alive and well 2 years after allogeneic bone marrow transplantation from HLA-identical sibling Leuk Lymphoma 1999 34: 287–294
Kelsey JL, Thompson WD, Evans AS (eds) . Measurement error In: Methods in Observational Epidemiology Oxford University Press: New York 1986 pp 285–308
Fleiss JL . Statistical Methods for Rates and Proportions, 2nd edn Wiley: New York, 1981 pp 217–219
Landis JR, Koch GG . The measurement of observer agreement for categorical data Biometrics 1977 33: 159–174
Buckley J . Epilog. Epidemiology Statistics Package Epicenter Software: Los Angeles 1986
Harlow SD, Linet MS . Agreement between questionnaire data and medical records. The evidence for accuracy of recall Am J Epidemiol 1989 129: 233–248
Feinstein AR, Horwitz RI . Double standards, scientific methods, and epidemiologic research New Engl J Med 1982 307: 1611–1617
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This research was supported in part by grants CA 30206, CA 33572 from the National Cancer Institute.
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Louie, A., Robison, L., Bogue, M. et al. Validation of self-reported complications by bone marrow transplantation survivors. Bone Marrow Transplant 25, 1191–1196 (2000). https://doi.org/10.1038/sj.bmt.1702419
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DOI: https://doi.org/10.1038/sj.bmt.1702419
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