Date

11-1-2011

Document Type

Thesis

Degree Name

M.S.

Department

Dept. of Medical Informatics and Clinical Epidemiology

Institution

Oregon Health & Science University

Abstract

Background: In November 2009 the United States Preventive Services Task Force updated its 2002 national guidelines for screening mammography. They transitioned from advising women to obtain a routine screening mammogram annually starting at the age of 40 to recommending a routine screening mammogram every two years starting at the age of 50. Although this change ignited a national debate, there was consensus on the need for a decision making resource to help women in their 40s understand the issues so they could make an informed choice in the matter. In response, we designed, built and tested a web-based breast cancer screening decision aid tool for women ages 38 to 48 with an average risk of developing breast cancer. The tool gave these women the resources they needed to work with their healthcare providers to make choices about screening mammography that were right for them. Engineered and developed in accordance with the International Patient Decision Aid Standards criteria, the tool was refined through three rounds of usability testing and ongoing feedback from select stakeholders. Methods: Pilot testing was conducted in a convenience sample of 51 age, risk-appropriate women to provide a preliminary assessment of the impact of the decision aid on screening choice and decisional conflict. The decision aid was also presented to five subject matter and five clinical experts for their critical review. Feedback on user interface, content, environment and adoption was obtained through semi-structured interviews. Results: A Wilcoxon signed-rank test was used to compare a woman's plans for screening mammography before and after using the decision aid tool. No significant change was seen (Z = -1.5, p = 0.132). Pre-post tool analysis of decisional conflict scores was undertaken using the same approach. A significant reduction in overall decisional conflict scores was observed (Z = -5.3, p < 0.001). In addition, a significant reduction in each of the decisional conflict subscores was seen: uncertainty (Z = -4.7, p < 0.001), feeling informed (Z = -5.2, p < 0.001), clarity (Z = -5.0, p < 0.001), and support (Z = -4.0, p < 0.001). The experts provided detailed feedback in response to the questions asked on content, user interface, methods of access and stakeholder adoption. They also provided spontaneous comments on language, controversy, values clarification and layout. Conclusions: A predominantly upper socioeconomic cohort of women participated in our web-based breast cancer screening decision aid pilot study. These women did not change their intention to have a screening mammogram in the next 1 to 2 years. They did, on-the-other-hand, experience a significantly decreased amount of decisional conflict in making that choice. In fact, they felt more certain, better informed, better supported and demonstrated increased clarity in their decision making process. These findings lead us to believe that, in this cohort, the breast cancer screening decision aid tool brings value to patient care not by impacting what a woman chooses but by impacting why or how she chooses it. Soliciting feedback from subject matter and clinical experts was an unusual but valuable step in shaping this decision aid tool. It was key in honing tool content as well as raising and exploring unforeseen issues. Furthermore, it allowed for a better understanding of how to handle the epidemiologic divide that prevents the experts from agreeing on a single breast cancer screening recommendation.

Identifier

doi:10.6083/M4ST7MT3

School

School of Medicine

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