J. G. Bruce1, J. Tucholka3, H. B. Neuman1,2,3 2University Of Wisconsin,Carbone Cancer Center,Madison, WI, USA 3University Of Wisconsin,Wisconsin Surgical Outcomes Research Program, Department Of Surgery, School Of Medicine And Public Health,Madison, WI, USA 1University Of Wisconsin,School Of Medicine And Public Health,Madison, WI, USA
Introduction: Decision-making for breast cancer surgery relies heavily on women’s preferences. To reach an informed decision, women require treatment information that is complete, is easily understandable, and encourages them to consider their values in the context of treatment options. Our objective was to assess the quality of online information available to support shared decision making for breast cancer surgery.
Methods: Four breast cancer surgery-related queries were done on Google and Bing, and websites from the first two pages reviewed. Two investigators evaluated each website for content pertinent to breast cancer surgery using an investigator generated list. The DISCERN instrument was used to evaluate: 1) websites’ structural components that influenced publication reliability, 2) quality of information on treatment choices. Scores on this 16-item validated questionnaire were normalized to a 5-point scale, with scores of 4/5 considered “good”. Agreement between reviewers on overall website quality was assessed.
Results: 45 unique websites were identified and reviewed (kappa 0.80). Websites were general information or health-care portals (48%), .GOV sites (13%), non-profit foundations (18%), hospitals (18%), and Youtube.com (2%). Websites satisfied a median 5/9 (range 0-9) content questions, with 2.2% covering all topics. Commonly omitted topics included: most women being candidates for both breast conservation and mastectomy (67%), the potential for a 2nd surgery to obtain negative margins after breast conservation (60%), post-surgery recovery times (58%), and equivalent survival regardless of surgery (53%). Websites had a median DISCERN score of 2.9 (range 2.0-4.5). Websites achieved higher scores on structural criteria (median 3.57 [2.07-4.71]), with 24.4% rated as “good”. In contrast, scores on treatment choice questions were lower (2.56 [1.3-4.38]), with only 6.7% scoring “good”. Four websites (all non-profit foundations) rated highly on both (figure). However, reviewers perceived these websites to be challenging to navigate, with significant effort required to find key content.
Conclusion: Although numerous online sources of breast cancer information exist, most websites do a poor job providing women with essential information necessary to play active roles in treatment decision-making. Even highly ranked websites provided information in a manner which was difficult to navigate and did not facilitate easy comparison of treatment choices in the context of women’s values. Access to high quality online breast cancer information that is balanced and approachable for Internet users of all experience levels would improve the quality of care provided to breast cancer patients.
