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