CAR-T cell therapy education
Summary
CAR-T cell therapy is a relatively new cellular therapy being offered to patients with relapsed or refractory leukemia. Due to the uncertainty of the course of treatment, patients and families need much educational support. Before this fellowship, there were minimal educational materials available for this patient population. Along with the support of my primary mentor, and under the supervision of the medical staff, I have developed materials for patients and families to use as they navigate through this treatment. The materials include an update to the About Kids Health website, a pamphlet on CAR-T cell therapy, and a pamphlet on cell collection. An information sheet for referring centers and a checklist for care coordinators is also being developed.
My overall learning objectives were to increase my knowledge of CAR-T cell therapy through a current literature review, learn how to develop educational resources, create materials, and disseminate the educational resources to my fellow colleagues. Through this fellowship, I was able to gain knowledge and skills on how educational resources are developed in the hospital setting, and was able to develop various resources for patients and their families. I gained expertise on the most current, evidence-based care of the patient going through CAR-T cell therapy. I developed some rudimentary skills one must acquire in a leadership role, such as communication skills and collaboration with members of the health care team. I have a better understanding of the complexities of the health care system that patients must navigate through. I have started to become a resource to my peers as we care for this patient population, and have been encouraged to continue on related projects.
Outcomes
This patient population is now able to understand the process of cell collection, and important details about apheresis that will improve their experience during collection. They will be given consistent, up-to-date information about CAR-T cell therapy in the form of written materials that they can refer to throughout their therapy. This will improve their experience of stress and uncertainty during therapy and aid with their coping. Before the process begins, they are able to become informed of this therapy by accessing the updated About Kids Health website, which is available nationwide.
The nursing staff that care for this patient population now have educational resources that they can access and use for teaching patients and their families. This will improve the quality of care given to this patient population. My colleagues now have a consistent, evidence-based set of resources, which will allow them to build trusting, therapeutic relationships with these families. I am a resource that they can access while they care for the patients. The organization now has an updated online resource, and educational materials to give patients and their families. For FACT accreditation standards, these resources now allow the organization to meet competency.
Overall experience
This fellowship experience has given me a great sense of accomplishment, and has renewed my passion for this patient population. Spending time at the university library, learning a new system for researching, and expanding my knowledge base was a reward in itself. I enjoyed those days very much, exercising my academic muscles and working independently towards this initial goal. As I combed through the current literature, and began to synthesize the research, my understanding increased and provided me with the rationale behind assessments and treatments we provide on the unit. I used resources on how to create educational materials for patients, including developing and assessing materials, and theories and methods of teaching patients with low literacy skills. These resources were extremely beneficial for setting the foundation of how to create materials for patients.
The actual writing of the materials was more of a challenge. I found it very difficult to take extremely complex, scientific details and processes, and present them in a way that is understandable to the lay person. The process of review of materials by the medical team can be lengthy, and requires much patience. This is the part of the fellowship that was most frustrating, and took the most time. The materials were reviewed and revised multiple times. They are currently with creative services awaiting final review and production.
My favorite aspects of this fellowship were collaborating with my mentor, gaining knowledge of the process, however frustrating it may be, and my interactions with families. I had the opportunity to speak with families and patients about what information they would like, and what would have helped them as they went through the therapy. They helped me to understand the stresses and concerns that they face, and consequently play a small role in improving the journey. I am extremely grateful to RNAO for this opportunity.
