Breast Cancer Survivors' Knowledge of Hereditary Breast and Ovarian Cancer following Genetic Counseling: An Exploration of General and Survivor-Specific Knowledge Items

Public Health Genomics. 2016;19(1):1-10. doi: 10.1159/000439162. Epub 2015 Sep 22.

Abstract

Background: Previous studies found genetic counseling increased participants' knowledge about hereditary breast and ovarian cancer (HBOC). However, most explored knowledge gain in unaffected women and the scale most commonly used does not include items that may be more pertinent to breast cancer (BC) survivors.

Aims: To explore whether genetic counseling impacts BC survivors' knowledge about HBOC and BC survivor-specific information.

Methods: The National Center for Human Genome Research Knowledge Scale and 5 additional items specific to BC survivors were tested among BC survivors; before genetic counseling (time 1), 2-3 weeks after genetic counseling (time 2), and 6 months following genetic counseling (time 3).

Results: A statistically significant change in knowledge over time was found. Post hoc analyses revealed statistically significant increases in knowledge between time 1 (median = 7.00) and time 2 (median = 10.00; p < 0.005), and between time 1 and time 3 (median = 9.00; p < 0.005).

Conclusion: Knowledge increased following genetic counseling, but the highest total average score at any time was <70% out of 100%. Additional analyses revealed items with low rates of correct response at all three time points, raising several concerns and the consideration of alternative approaches to measuring knowledge.

MeSH terms

  • Female
  • Genetic Counseling* / methods
  • Genetic Counseling* / psychology
  • Health Knowledge, Attitudes, Practice
  • Hereditary Breast and Ovarian Cancer Syndrome* / genetics
  • Hereditary Breast and Ovarian Cancer Syndrome* / psychology
  • Humans
  • Middle Aged
  • Patient Education as Topic / methods
  • Survivors / psychology*