Background: According to the Institute of Medicine report, evidence demonstrates the need for patient education due to the complexity of cancer care. Gaps in care can occur due to lack of coordination and patient understanding of their care. At the time of diagnosis, breast cancer patients are often confused concerning the disposition and the roles of their treatment team. Initially, the navigation team provided and reviewed breast cancer materials. However, the navigation team identified the need for a booklet or guide to meet patient expectations for educational material that is handy and easy to reference.
Objectives: Design guide and provide information based on criteria determined through collaboration and feedback from the provider, patient, caregivers, and support staff. Organize and standardize the treatment message to reduce confusion during an overwhelming patient process. Provide a tool that streamlines patient process in a clear and concise manner. Easy-to-carry tool both functional and convenient for patient and caregiver that provides information that supports the multidisciplinary process before, during, and after treatment. Provide A to Z resources and a support network specific to our community, locally available resources, and breast program. User-friendly, attractive, portable (purse size), concise, “to reduce anxiety and not overwhelm.”
Methods: • Utilized a team approach for development that included breast program leadership, breast center radiologists and staff, providers (medical, radiation, surgical, and reconstruction oncologist) and their staff • Conducted and documented pre- and postproduction survey that included patients and caregivers • Used information from surveys to determine the need for such a booklet specific to our breast program • Used the surveys to quantify patient expectation of information at specific time points of treatment • Researched other breast program education to determine the amount and type of content other programs were using • Provided mock-ups and solicited edits and input from patients, caregivers, providers and staff, hospital department quality and education teams • Conducted postproduction surveys to determine needed edits, additions, or revisions (in process).
Results: Fifty percent of patients surveyed reported less than expected information regarding initial appointments and presurgical teaching; 93% reported that a booklet or guide outlining appointments and presurgical instructions would be “very helpful.” Development of a purse-sized booklet entitled The Breast Cancer Navigator, a Guide to Personalized Breast Care. A patient and caregiver organized resource that: • Supports the multidisciplinary approach for breast cancer care in an easy-to-understand format • Provides resources for survivorship, financial, and psychosocial support.
Conclusion: Often we can overwhelm patients with booklets, handouts, and other information without taking into consideration that the patient lacks understanding of the different provider roles. Through this process, we were able to simplify the breast cancer treatment continuum by providing a simple, portable, easy-to-use patient guide. We were also able to empower patients and providers by involving them in the process. The booklet was a great team effort powered by patients and driven by the treatment team.
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Nekhlyudov L, Levit L, Hurria A, Ganz PA. Patient-centered, evidence-based, and cost-conscious cancer care across the continuum: translating the Institute of Medicine report into clinical practice. CA Cancer J Clin. 2014;64:408-421.