Development of a Self-Navigated Educational Toolkit for Hematological Cancer Patients, Caregivers, and Family/Friends

This paper describes the development and evaluation of hematological cancer informational toolkits over the course of a three year study. We discuss the results of formative research to assess the shared and differing informational needs of hematological cancer (specifically leukemia, lymphoma, and multiple myeloma) patients, their caregivers, and their family/friends throughout the continuum of diagnosis, treatment, and post-treatment. We describe how these data were used to develop specific messages for each audience and phase and how we tested these messages with patients, caregivers, and family/friends recruited through partnerships with two organizations—the Wellness Community and the American Cancer Society's Patient Navigator program. Testing conducted in five geographically diverse locations within the U.S. yielded data on comprehension, interest, readability, and usefulness of content as well as accessibility and ease of different toolkit formats, such as DVDs and CD-ROMs. Finally, we describe the final evaluation of the toolkit in real-world settings through the ACS Patient Navigator program and other national cancer education and support organizations. Evaluation metrics included toolkit distribution, utility, and satisfaction by both audience members and organizational representatives. The results of this study demonstrate the utility of health communication techniques—such as audience segmentation and formative research for cancer education materials—as well as the practical advantages and limitations of self-directed informational toolkits in real-world settings.