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 ...

Developing a Web-Based Shared Decision-Making Tool for Fertility Preservation Among Reproductive-Age Women With Breast Cancer: An Action Research Approach

“…This work implied that the SDM for fertility preservation, as guided by action research, would bridge the gap between the patients and clinicians and caters more toward the feelings and needs of the patients’ minds and bodies than previous approaches. The findings were consistent with those of previous studies [ 33 , 34 ] for which decision-aid websites for breast cancer surgery or comics for newly diagnosed breast cancer in women were developed. Compared with the development of medical information websites, the development of web-based decision aids using action research may be more systematic and humanistic because they account for both the patients’ and health care providers’ perspectives and needs.…”

“…The action research approach is particularly relevant when treating patients with chronic diseases and complex care needs [ 31 , 32 ]. Previous investigators have applied action research to build web-based comics [ 33 ] or decision-aid websites [ 34 ] about breast cancer surgery in Taiwan. However, few study the decision-making and research processes for oncofertility in Asia.…”

Patient empowerment for cancer patients through a novel ICT infrastructure

“…To this direction multiple decision aid systems have been developed for helping patients to make informed decisions for prostate cancer screening [18] and treatment [19] and for breast cancer surgery [20], however offering simplistic support and with limited evaluation. In addition, questionnaire-based tools for systematic monitoring the mental health of cancer patients [21] and their fatigue [22] and for supporting clinical decision support , self-reporting and self-management [23] (e.g.…”

Developing a Web-Based Shared Decision-Making Tool for Fertility Preservation Among Reproductive-Age Women With Breast Cancer: An Action Research Approach (Preprint)

“…The action research approach is particularly relevant when treating patients with chronic diseases and complex care needs [31,32]. Previous investigators have applied action research to build web-based comics [33] or decision-aid websites [34] about breast cancer surgery in Taiwan. However, few study the decision-making and research processes for oncofertility in Asia.…”