Standardized and focused education for patients receiving CAR T-cell therapy and their caregivers should be part of discharge procedures.
Ensuring that oncology staff is adequately trained on CAR T-cell therapy and the potential adverse effects is of the utmost importance. With multiple recent FDA approvals for the use of chimeric antigen receptor (CAR) T-cell therapy, including the treatment of acute lymphocytic leukemia, diffuse large B-cell lymphoma, as well as a multitude of clinical trials, creating standards for nursing care is essential.
CAR T-cell therapy is a patient-specific gene therapy that involves collecting the patient’s own T cells, genetically modifying them, and reinfusing the cells into the patient to elicit an immune response. It provides hope for patients who have relapsed or are refractory to prior therapy and otherwise would not have many other treatment options. FDA commissioner Scott Gottlieb, MD, has said that, “In just several decades, gene therapy has gone from being a promising concept to a practical solution to deadly and largely untreatable forms of cancer."1
Not only do nurses need to be prepared to care for patients during their treatment, but also in how to educate patients and caregivers on potential long-term adverse effects. Care of the patient receiving CAR T-cell therapy is intensive and requires the coordination and cooperation of the entire multidisciplinary team, as well as active involvement of the patient and caregiver. Standardized and focused discharge education for patients and caregivers should be used in an effort to optimize learning.
Discharge instructions for the patient should initiate with the decision to receive CAR T-cell therapy. The patient must designate a caregiver to assist in providing care before, during, and after cell infusion. Education should be aimed at enforcing simple yet important concepts to increase retention of specific topics, including late onset neurotoxicity and the development of any signs or symptoms of infection. As CAR T-cell programs expand at designated institutions, establishing a strict discharge plan can help to increase safety and improve patient outcomes.
Juliane Brogren, MD, established a discharge class on a 36-bed oncology unit in an NCI-designated treatment center.2 In a presentation at the Oncology Nursing Society 42nd Annual Congress, she discussed the discharge classes, which were offered daily for patients and families. Using this time to gauge understanding of crucial concepts prior to discharge is key to maintaining safety.
Patients and their caregivers must appreciate the importance of staying within a 2-hour radius of their treatment center for at least 30 days following infusion. Adverse events may not occur immediately, so patients should stay close in the event that one presents itself after a bit of time. One possible late onset adverse event is neurotoxicity, which is evidenced by word-finding difficulties, confusion, somnolence, fatigue, aphasia, and seizure-like events. The caregiver can assist in identifying this neurotoxicity at an early stage, allowing for medical evaluation and treatment if necessary.
Brogren says a discharge phone call can be a helpful teaching tool, enabling staff to check on patient health status and reinforce CAR T-specific education. The concept of the discharge class can be replicated and implemented as a pre-requisite to CAR T therapy. The discharge classes and phone calls discussing crucial elements of cytokine release syndrome, neurotoxicity, and other adverse events will provide the necessary information throughout a variety of time points to ensure patient and caregiver understanding and retention.
CAR T-cell therapy is a revolutionary, innovative advancement in novel therapies. According to Andre Goy, MD, Lymphoma Division Chief of the John Theurer Cancer Center in Hackensack, New Jersey, and chief science officer of Regional Cancer Care Associates, “CAR T-cell therapy is not only a landmark in oncology, but a landmark in medicine.”
As this is such a pivotal therapy, patient and caregiver-focused education in post-CAR T-cell treatment is a crucial component in continuity of care, limiting unplanned inpatient readmissions, and increasing patient satisfaction. Structured discharge planning must begin upon admission to ensure overall improvement of safety and patient specific goals after CAR T-cell therapy. A multidisciplinary, systematic approach focusing on adverse event prevention and management will contribute to positive patient and clinical outcomes. Continuous efforts in clinical applications, education, and research will improve evidence-based nursing practices throughout this promising field in medicine.