BLOG: Caring for patients receiving adoptive cellular therapy
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Adoptive cellular therapies such as chimeric antigen receptor T-cell therapy have transformed the landscape of care for patients with relapsed or refractory hematologic malignancies.
At the same time, CAR T-cell therapy presents patients with significant uncertainty with respect to treatment (eg, occurrence and severity of toxicity), treatment efficacy and prognosis (eg, durability of remission, cure) or the possibility of additional treatment after CAR-T.
CAR T-cell therapy can lead to considerable uncertainty for patients with regard to durability of remission, toxicity and the potential need for additional subsequent treatments. Image: Adobe Stock
The latter two are driven by the potential for durable remission or cure vs. rapid disease progression, which sometimes is not amenable to further cancer-directed therapy.
Prospective studies have demonstrated durable psychological distress and severe physical symptoms in about a quarter of patients who undergo CAR-T.
Given the intensity of therapy and adverse effects — most notably neurologic toxicity — caregivers also experience incredible burden and psychological distress.
Even in these high-risk circumstances, oncologists preferentially discuss positive outcomes of CAR T-cell therapy, and patients generally tend to have an overly optimistic view of their prognosis.
Honest prognosis discussions that address the full range of potential outcomes and the uncertainty that lies ahead support hope, promote trust in the care team and reduce psychological distress. On the other hand, a lack of such discussions may rob patients and caregivers of the opportunity to plan and prepare, with resulting subsequent decisions made on an urgent basis, care that is discordant from their goals and priorities, and — ultimately — decisional regret.
This constellation of findings places CAR T-cell therapy recipients at high risk for poor end-of-life outcomes. Perhaps unsurprisingly, the majority of recipients are hospitalized within 30 days of death, and hospice and palliative care utilization is uncommon in this patient population.
End-of-life outcomes for children receiving CAR T-cell therapy have not yet been systematically described. However, based on the hematologic malignancy and hematopoietic cell transplant experience, they likely are to experience a high degree of symptom burden and high-intensity care at end of life, with little ability to prepare.
While many children have access to concurrent care, additional structural barriers — such as the inability to receive transfusions or disease-directed treatment promoting comfort while on hospice — exist for adults, further complicating the delivery of high-quality end-of-life care.
Fortunately, high-quality clinician communication that is honest, transparent and compassionate can improve some of the challenges above.
Barriers in education and training, language and cultural differences, workload burden, and time availability that may prevent physicians from communicating in the ideal way should be addressed.
In addition, involvement of subspecialty palliative care is associated with reduced patient/caregiver distress, greater prognostic awareness and better preparation.
Finally, research is essential to understanding and improving the lived experience of patients receiving CAR T-cell therapy across all treatment outcomes.
References:
- Barata A, et al. Transplant Cell Ther. 2024;doi:10.1016/j.jtct.2024.01.063.
- Brock KE, et al. Pediatr Blood Cancer. 2016;doi:10.1002/pbc.25822.
- Dhawale T, et al. Cancer. 2023;doi:10.1002/cncr.34557.
- Dhawale T, et al. Transplant Cell Ther. 2024;doi:10.1016/j.jtct.2024.01.069.
- El-Jawahri A, et al. JAMA. 2016;doi:10.1001/jama.2016.16786.
- Johnson PC, et al. Blood Adv. 2023;doi:10.1182/bloodadvances.2022009117.
- Johnson PC, et al. J Natl Compr Canc Netw. 2021;doi:10.6004/jnccn.2020.7678.
- Odejide OO, et al. J Clin Oncol. 2016;doi:10.1200/JCO.2016.67.8177.
- Ullrich CK, et al. Biol Blood Marrow Transplant. 2016;doi:10.1016/j.bbmt.2016.02.012.
- Ullrich CK, et al. Blood. 2010;doi:10.1182/blood-2009-10-250225.
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