Making sense of cancer risk calculators on the web

J Gen Intern Med. 2008 Mar;23(3):229-35. doi: 10.1007/s11606-007-0484-x. Epub 2008 Jan 11.

Abstract

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.

MeSH terms

  • Cross-Sectional Studies
  • Female
  • Humans
  • Information Storage and Retrieval
  • Internet*
  • Male
  • Medical Informatics / methods*
  • Medical Informatics / statistics & numerical data
  • Medical Oncology / standards
  • Medical Oncology / trends
  • Neoplasms / diagnosis
  • Neoplasms / epidemiology*
  • Patient Education as Topic*
  • Reproducibility of Results
  • Risk Assessment
  • United States / epidemiology