Making Sense of Cancer Risk Calculators on the Web

• Published in: Journal of general internal medicine : JGIM Vol. 23; no. 3; pp. 229 - 235
• Main Authors: Levy, Andrea Gurmankin, Sonnad, Seema S., Kurichi, Jibby E., Sherman, Melani, Armstrong, Katrina
• Format: Journal Article
• Language: English
• Published: New York Springer-Verlag 01.03.2008; Springer; Springer Nature B.V
• Subjects: Biological and medical sciences; Bladder; Breast cancer; Colon; Cross-Sectional Studies; Female; General aspects; Gynecology. Andrology. Obstetrics; Health behavior; Humans; Information Storage and Retrieval; Internal Medicine; Internet; Male; Mammary gland diseases; Medical Informatics - methods; Medical Informatics - statistics & numerical data; Medical Oncology - standards; Medical Oncology - trends; Medical sciences; Medical screening; Medicine; Medicine & Public Health; Melanoma; Miscellaneous; Neoplasms - diagnosis; Neoplasms - epidemiology; Original; Original Article; Ovaries; Patient Education as Topic; Prostate; Public health; Public health. Hygiene; Public health. Hygiene-occupational medicine; Reproducibility of Results; Risk Assessment; Risk factors; Tumors; United States - epidemiology; United States; United States > US; cancer risk; breast cancer; web risk calculators; internet; Human; Breast disease; Risk calculator; Risk; Breast cancer; Malignant tumor; Medicine; Mammary gland diseases; Risk factor; World wide web; Mammary gland; Internet; Cancer
• ISSN: 0884-8734; 1525-1497
• DOI: 10.1007/s11606-007-0484-x

Objective Cancer risk calculators on the internet have the potential to provide users with valuable information about their individual cancer risk. However, the lack of oversight of these sites raises concerns about low quality and inconsistent information. These concerns led us to evaluate internet cancer risk calculators. Design After a systematic search to find all cancer risk calculators on the internet, we reviewed the content of each site for information that users should seek to evaluate the quality of a website. We then examined the consistency of the breast cancer risk calculators by having 27 women complete 10 of the breast cancer risk calculators for themselves. We also completed the breast cancer risk calculators for a hypothetical high- and low-risk woman, and compared the output to Surveillance Epidemiology and End Results estimates for the average same-age and same-race woman. Results Nineteen sites were found, 13 of which calculate breast cancer risk. Most sites do not provide the information users need to evaluate the legitimacy of a website. The breast cancer calculator sites vary in the risk factors they assess to calculate breast cancer risk, how they operationalize each risk factor and in the risk estimate they provide for the same individual. Conclusions Internet cancer risk calculators have the potential to provide a public health benefit by educating individuals about their risks and potentially encouraging preventive health behaviors. However, our evaluation of internet calculators revealed several problems that call into question the accuracy of the information that they provide. This may lead the users of these sites to make inappropriate medical decisions on the basis of misinformation.