Developing a Decision-Aid Website for Breast Cancer Surgery: An Action Research Approach.

ABSTRACT

BACKGROUND: Patients with early-stage breast cancer have numerous options when choosing the type of breast surgery method to be applied. Each of these options lead to a similar long-term survival rate, but result in significant differences in appearance, function, cost, recurrence rate, and various other relevant considerations. However, the time available for detailed communication with each patient is often limited in clinics, which puts these women under great psychological stress and can hinder their surgery-related decision making. OBJECTIVE: The objective of this study was to develop a multipurpose surgery decision-making website providing medical information, psychological support, and decision-related simulation for women during breast cancer surgery-related decision making. METHODS: Using the 4 steps of action research, which involve multigroup teamwork via regular team meetings, the following were performed (1) Planning searching, analyzing, and evaluating health websites to consensually decide the major infrastructure; (2) Action work was performed simultaneously in 4 groups, which consisted of medical information collection and editing, patient interviews and data extraction, webpage content design, and programming to create or host the website; (3) Evaluation the website was tested by clinical experts and focus groups of former breast cancer patients to assess its effectiveness and pinpoint appropriate improvements; and (4) Reflection constant dialogue was conducted between the various participants at each step, which was used as the foundation and motivation of next plan-action-evaluation-reflection circle. RESULTS: Using the action research approach, we completed the development of our website, which includes the following (1) "Woman's Voice"-an animated comic depicting the story of a female breast cancer patient with interspersed questions for the users that will help them better empathize with the experience; (2) "Cancer Information Treasure House"-providing breast cancer surgery-related information through text, tables, pictures and a presentation video; (3) "Decision-making Simulator"-helping patients think through and check the pros and cons of the different surgical options via visual-based interactions including "Stairs Climbing" and "Fruit of Hope"; and (4) "Recommended Links"-providing reliable websites for further reference. Additionally, we have further improved the website based on the feedback received from postsurgery breast cancer patients and clinicians. We hope to continue improving to better meet both the patients' and health providers' needs and become a practical decision-making aid for patients undergoing breast cancer surgery. CONCLUSIONS: We have created the first breast cancer surgery decision-making assistance tool in Taiwan using a "Web-based" and multifunctional website design. This site aims to provide health care knowledge, psychological healing, and emotional support functions, as well as decision-making capability enhancement simulations. We look forward to assisting breast cancer patients in their decision-making process and expect our website to increase patient's autonomy and improve their communication with clinicians.