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


CONCLUSIONS
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.


CONCLUSIONS
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.
Clayman
Marla L
ML
Center for Communication and Medicine and Division of General Internal Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Boberg
Eric W
EW
Makoul
Gregory
G
D001943:Breast Neoplasms; D005260:Female; D006801:Humans; D020407:Internet; D008137:Longitudinal Studies; D020380:Needs Assessment; D010353:Patient Education as Topic; D016730:Program Development; D012944:Social Support; D014584:User-Computer Interface