Introduction
The modern era of cancer treatment is ripe in number and variety of therapies.1, 2 Chimeric antigen receptor (CAR) T cell therapy is a prime example of this complex paradigmatic shift. Promising early response outcomes in acute lymphoblastic leukemia (ALL) opened the door to applying adoptive cell therapies to other malignancies and patient populations.3-5 Despite this promise, CAR T cell therapy remains an experience of advanced cancer; CAR T cell therapy is exclusively used in advanced disease and survival after therapy for all indications remains relatively unfavorable.6, 7
Best practices in palliative and supportive care need to parallel this evolution in cancer care.8-12 Decision-making becomes increasingly complex for both clinicians and families. Prognostic uncertainty, unfamiliar toxicity profiles, and the unclear significance of tumor-specific molecular profiles are now routine considerations in the family decision-making process.13 Cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome (ICANS), two hallmark acute toxicity events following CAR T cell therapy, are commonly encountered in the first month after therapy.14 Symptom burden has been described as significant in adults after CAR T cell therapy, particularly those who experience CRS and ICANS.15-17 Different from other early phase clinical trials, CAR T cell therapy clinical trials often require family relocation to one of a limited number of centers, typically for weeks of close observation for acute toxicity. However, few patient-centered supportive care recommendations exist for this population.18 Further, supportive care needs, particularly from the perspective of the patient and family, are largely undescribed.19-21
The objective of this qualitative study was to understand supportive care needs during CAR T cell therapy from the perspectives of pediatric patients and their parent caregivers. We aimed to identify opportunities for improvement in symptom management, communication, and psychosocial support, with the greater goal of informing optimal supportive care management.
Methods