The use of patient and provider perspectives to develop a patient-oriented website for women diagnosed with breast cancer

Abstract Objective Develop a patient education program that provides accurate and easy-to-understand information for newly diagnosed breast cancer patients. Methods To inform development of the patient education program, we conducted a longitudinal series of semi-structured interviews with 30 breast cancer patients as well as one-time interviews with 22 healthcare providers. Responses guided the study team's decisions regarding both form and content. Results We created a website ( www.cancercarelinks.org ) that reflects the needs expressed by patients and providers. The website is structured to answer six key questions that emerged in the interviews: What does my diagnosis mean? What will my treatment be like? Who will be involved with my treatment? What has treatment been like for others? How can I share my story with my family and friends? Where can I find more information and support? In a beta-test, 12 breast cancer patients rated the website as very clear, informative, trustworthy, useful, easy-to-understand, and easy to use. Conclusion The emotional weight of a breast cancer diagnosis, coupled with the amount of disparate information available, can be overwhelming for patients. Providing clear, accurate, and tailored information is a way to meet information needs and allay fears that patients will receive “bad” information. Practice Implications Combining patient and provider input with the perspectives of a multidisciplinary team resulted in a promising patient education program for women diagnosed with breast cancer. The logic of this approach has implications for developing patient education programs for a variety of clinical contexts.