Patient Education for CAR T-Cell Therapy

Swapna Johncy, APRN

Chimeric antigen receptor (CAR)-T cell therapy is a new class of cellular immunotherapies that involves ex vivo genetic modification of T cells to incorporate an engineered CAR. CAR T-cell therapies have demonstrated unprecedented rates of complete response in patients with hematologic malignancies with no other treatment options. Cytokine release syndrome (CRS) and neurologic events like immune effector cell-associated neurotoxicity syndrome (ICANS) are unique adverse events related to CAR T-cell therapy.

The education opportunities for patients undergoing CAR T-cell therapy and their caregivers are crucial for patient safety and plan of care adherence. The nurses, advanced practice providers, and physicians play a vital role in providing patient information and reinforcing the care plan. A review of current literature on CAR T-cell therapy and personal experience recommends that reiteration of data is imperative to build the knowledge base for patients and caregivers. The patient and family need a review of information and patient education at each follow-up visit. The role of nurses in patient education about the side effects of CAR T-cell therapy is critical for the safety of patients and to enhance the benefits of the treatment.

Education at Each Step of CAR T-Cell Therapy

Several chimeric antigen receptors (CAR) T-cell therapy products are used to treat hematology-oncology patients (Table 1). The patients are provided with education booklets on chemotherapy, clinical trials, and research developed by experts at MD Anderson The product-specific information sheet is handed to patients and reviewed with the patient and caregiver before consenting to the treatment.

Table 1. CAR T-Cell Therapy Products Used to Treat Hematology-Oncology Patients

In addition to following best practices regarding verbal communication with these patients, creating standardized patient and family education documents that meet the general patient population’s needs and institutional guidelines is essential. The nurses and the clinic team educate and review the information sheet with patients and their caregivers at each step of CAR T-cell therapy: consent, apheresis, lymphodepleting chemotherapy, CAR T-cell infusion, potential side effects, signs and symptoms to watch for, and follow-up.

Patient information sheets are available in English, Spanish, and Arabic languages. Every effort should be made to provide translations to patients and family members who need materials in other languages. Interpreters should be available for non-native language speakers during the consent process and clinic visits throughout the treatment period to fully communicate the potential benefits and risks of the therapy, as well as to ensure clear communication and understanding of and by the patient and family.

In addition, evidence-based methods to assess patient understanding, such as the teach-back technique, can be used. The effects of CAR T-cell therapy effects on pregnancy are currently unknown, and patients must be informed that women should not become pregnant, and men should not father children.

Challenges in Patient Education

The nurses and other team members face several challenges in educating the patient. Patients often have many contemplative questions regarding CAR T-cell therapy, so nurses should be familiar with the literature and the latest developments in the field (see Table 2). the Time constraints, language barriers, and staff shortages due to COVID-19 pandemic are other barriers the team faces. Patients and caregivers verbalize understanding of the information provided, but they need reinforcement to ensure patient safety and positive outcome.

Table 2. Patients Ask Questions About These Aspects of CAR T-Cell Therapy

CAR T Cell therapy is a multifaceted treatment modality, and providers, patients, and caregivers need comprehensive education. Continuing education for providers is essential to keep up with the changing practices and to provide excellent patient care through evidence-based approaches.

Swapna Jacob Johncy, RN, MSN, is an advanced practice registered nurse affiliated with the University of Texas MD Anderson Cancer Center, Houston, Texas.

For more information

National Comprehensive Cancer Network. (2020). NCCN Clinical Practice Guidelines in Oncology: B cell lymphomas [v.3.2020]. https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1480

McConville, H., Harvey, M., Callahan, C., Motley, L., Difilippo, H., & White, C. (2017). CAR T-Cell Therapy Effects: Review of Procedures and Patient Education. Clinical Journal of Oncology Nursing, 21(3), E79–E86. https://doi.org/10.1188/17.CJON.E79-E86

Taylor, L., Rodriguez, E., Reese, A., & Anderson, K. (2019). Building a Program: Implications for Infrastructure, Nursing Education, and Training for CAR T-Cell Therapy. Clinical Journal of Oncology Nursing, 23(2), 20–. https://doi.org/10.1188/19.CJON.S1.20-26