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Educating Patients and Caregivers About CAR T-Cell Therapies: A Nursing Perspective

Alix Beaupierre, BSN, RN, OCN

Transplant and Cellular Therapy Nurse Coordinator
Blood and Marrow Transplant and Cellular Immunotherapy
Moffitt Cancer Center
Tampa, Florida


Alix Beaupierre, BSN, RN, OCN®, has disclosed that she has received fees for non-CME/CE services from Kite Pharma.


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Released: September 9, 2019

Since the FDA first approved tisagenlecleucel and axicabtagene ciloleucel in 2017, CAR T-cell therapies have become a standard treatment option for patients with relapsed/refractory acute lymphoblastic leukemia (ALL) and diffuse large B-cell lymphoma (DLBCL) who historically had few alternatives. Given that CAR T-cell trials are ongoing in other hematologic malignancies and solid tumors, the number of CAR T-cell–treated patients will likely continue to grow. To ensure the best patient outcomes, it is vital for nurses to educate patients and caregivers about each phase of the CAR T-cell process, which may span 3-10 weeks plus follow-up. Because active disease may affect a patient’s performance status and attention span, nurses should provide education in verbal and written forms.

Educating on Candidacy for CAR T-Cells
The CAR T-cell process begins with the initial consult at an authorized CAR T-cell treatment center. Early referral is beneficial for starting counseling regarding treatment options, risks, and benefits. It is crucial to have the patient’s records, including original and most recent scans, and pathology reports. An accurate medical history should be collected and physical examination performed.

Patients should also be educated on the candidacy criteria for CAR T-cell therapy. Adults are eligible for axicabtagene ciloleucel provided that they have DLBCL not otherwise specified, primary mediastinal large B-cell lymphoma (PMBCL), high-grade B-cell lymphoma, or DLBCL arising from follicular lymphoma, and demonstrate relapsed/refractory disease after ≥ 2 lines of systemic therapy. Tisagenlecleucel has the same indications—excluding PMBCL—and is approved for individuals aged 25 years or younger with B-cell precursor ALL that is refractory or has relapsed at least twice. Neither therapy is indicated for primary central nervous system lymphoma.  

Identifying Lodging and Caregivers
Nurses play a key role in educating patients on lodging requirements and identifying suitable primary and alternative caregivers. Housing is needed because patients must stay close to the center for at least 4 weeks following CAR T-cell infusion to enable monitoring and care for potential toxicities

Caregivers should ideally be at least 18 years of age, in good health, able to provide hands-on care, and available around the clock for a designated time frame. Caregivers should not be hired. To assist in caregiver selection, nurses should review these key caregiver responsibilities:

  • Can understand and recognize symptoms of CRS and neurotoxicity, including taking oral temperature and identifying neurologic impairment
  • Can communicate with transplant team when there is a change in patient status
  • Transports or accompanies the patient to emergency and scheduled appointments
  • Administers oral and potentially IV medications as instructed
  • Prepares meals and keeps lodgings clean

Counseling on Leukapheresis and Bridging Therapy
Nurses should review the leukapheresis process with patients and caregivers, including potential adverse events of apheresis. Eligibility criteria for leukapheresis (ie, laboratory parameters) may differ among centers. Medications should be reviewed for any chemotherapy, steroids, or anticoagulants that may interfere with successful apheresis. Nurses should encourage caregivers to attend collection day because patients are often fatigued and are recommended not to drive.

Nurses should educate patients that while their T-cells are being manufactured—which can take up to 4 weeks—they need to be monitored closely to manage disease symptoms. Regular visits may include symptom management via bridging chemotherapy, steroids, radiation, and/or pain medications. Because chemotherapy generally occurs in an ambulatory setting, education should be provided on standard home chemotherapy precautions.

Educating on Acute and Long-term Toxicities
It is imperative for nurses to educate patients and caregivers on identifying signs of CRS and neurotoxicity, along with how to contact the treatment team. Nurses should offer information on the distinct treatment algorithms for CRS and neurotoxicity, including the potential for temporary escalation of care to intensive care, and reassurance that symptoms are usually transient and reversible.

In the long-term follow-up phase, nurses should educate patients and caregivers regarding the risk for recurrence of CRS and neurotoxicity and advise patients to not drive or operate heavy machinery for 8 weeks after the infusion. Patients should be informed that there is a risk for prolonged cytopenias and frequent infections, which may require supportive care from their local oncologist.

To get individualized recommendations on CRS and neurotoxicity management from multidisciplinary experts, please visit CCO’s Interactive Decision Support Tool: Assessment and Management of CAR T-Cell Toxicities.

Provided by Clinical Care Options, LLC

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Supported by educational grants from
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