Multiple myeloma (MM) is an incurable cancer characterized by abnormal plasma cells in the bone marrow, resulting in increased risk of infection. Autologous stem cell transplant (ASCT) is the most effective treatment for MM, but successful transplant requires the patient and caregiver to learn and independently implement medical tasks. The Ready for Transplant (R4T) ethnographic-based formative evaluation includes evaluation of ongoing patient education and the addition of novel supplemental educational videos that patients can review before in-person transplant education. To evaluate R4T, a formative evaluation informed by utilization-orientated evaluation theories, including over 150 hours of ethnographic observation of nurse/patient education (N = 70), plus retrospective and prospective patient (N = 35) and clinician interviews (N = 7) was conducted over 18 months. Through thematic analysis, barriers and facilitators of the patient's ability to process education surrounding ASCT were identified. Barriers included anxiety surrounding what to expect in ASCT, anxiety surrounding what to expect at the education visit, overwhelming volume of information, lack of medical expertise, and disengaged patients, while facilitators included large social networks willing to help and clinician adjusting script to meet unique needs of the patient. This manuscript represents an iterative method for improving on education that people with MM receive surrounding ASCT. Ultimately, the supplemental video-based education was created to address modifiable social and psychological factors by providing generalized information that could then be tailored during in-person meetings to meet each patients' individual needs.
Keywords: Ethnography; Hematologic neoplasms; Medical illustration.
© 2020. American Association for Cancer Education.