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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 429-435 |
| Number of pages | 7 |
| Journal | Patient education and counseling |
| Volume | 72 |
| Issue number | 3 |
| DOIs | |
| State | Published - Sep 2008 |
Funding
This study was funded, in part, by a grant from The Arthur Vining Davis Foundations (PI: Dr. Makoul). We are grateful for the dedicated and sensitive research assistance of Ms. Kathy Bresler, as well as the creative and technical efforts of Mr. Quinn Stephens, a very talented digital media designer. We thank all of the patients, family members, and providers who participated in this study, especially Drs. Kevin Bethke, Nora Hansen and Seema Khan, surgical oncologists who supported the idea of this study, allowed us to work in their practice settings, and provided helpful insights throughout the process.
Keywords
- Breast cancer
- Internet
- Patient education
ASJC Scopus subject areas
- General Medicine
