Discussion
This qualitative study seeks to describe supportive care needs during CAR T cell therapy from the child and parent perspectives. Among families who chose to proceed with CAR T cell therapy, we found most families felt this was a clear decision. Symptoms were tolerable and some families reported a “symptom paradox,” a desire for some toxicity to feel like the treatment was working. Families described feeling challenged by the emotional and financial burdens of relocating and the unpredictability of navigating a novel therapy. Altogether, these insights highlight opportunities for future supportive care intervention.
Families predominantly felt the path to their decision was straightforward. Hope, trust, and self-efficacy facilitated the decision-making process. Qualitative decision satisfaction was prevalent in our sample, with all but one family disclosing they would make the same decision again. Confirmation bias may partly explain this degree of decision satisfaction, as described in another general pediatric oncology study.31 Prevalence of hopeful patterns of thought, trust in the medical team, and perceived self-efficacy were previously described as protective against regret,31-34 which may also be the case in our sample. Moreover, these constructs are important mitigators of uncertainty-related distress, a source of emotional distress common not only to our pediatric cohort, but another study among adult patients treated with CAR T cell therapy.21, 35 Thus, supporting hope, trust, and self-efficacy are likely important in providing quality supportive care for families during CAR T cell therapy. General psychosocial challenges, though not unique to CAR T cell therapy, were also commonly endorsed in our study. Altogether, our findings reinforce the importance of a multidisciplinary team to support families through the challenges of therapy.18
Although families generally reported tolerable symptoms, our themes expose risks of inadequate symptom management. Experiential knowledge undoubtedly produced a response shift affecting families’ perception of symptom burden during therapy.36 Symptom normalization results in the perception, in both clinicians and families, that symptom-related suffering is a “normal” part of treatment and that adequate symptom control is unattainable.37 For example, when families accept nausea and vomiting to be a “normal” part of chemotherapy, they may be less likely to request support in symptom management. Specific to CAR T cell therapy, normalizing the experience of CRS and ICANS may lead families to consider symptom management unnecessary. Further, when early toxicity with CAR T cell therapy is considered an indication of efficacy,38symptoms become a welcomed experience, resulting in a so-called “symptom paradox” effect. Uncertainty-related distress may develop in anticipation of CRS or ICANS. Altogether, this represents an opportunity for improving family support through both the language we use when counseling for treatment and the screening of symptoms during treatment.
Our sampling procedures were limited by interviewing families who chose and successfully completed treatment with CAR T cell therapy. Thus, the full spectrum of decision-making is not represented. Importantly, the rationale and needs probably differ between families that choose CAR T cell therapy and those who do not. Further, our study does not represent the experience of families with prohibitive access to such investigative therapy. The families in our study emphatically articulated the importance of self-efficacy in accessing CAR T cell therapy and in adequately preparing themselves for the medical and emotional complexities of treatment. Paired with the deep sense of trust our participants shared with their medical team, this poses a serious threat among disenfranchised people to access CAR T cell therapy.39 Racial, ethnic, and payor disparities exist in referral practices for CAR T cell therapy and inclusion in clinical trials.40 Identifying interventions to mitigate these risks must be a priority for future investigation.
Several additional limitations of this study must also be noted. Despite recruiting Spanish-speaking participants, only English-speaking participants volunteered for interview participation. Thus, our findings likely do not represent the experience of non-English speaking families. Only one father was represented in the parent participants. Our participants described predominantly positive experiences. This may reflect social desirability bias or recall bias. We chose to interview patients receiving CAR T cell therapy for any malignancy type; we continued data collection until thematic saturation was achieved and thematic differences were not appreciated between diagnosis groups. Finally, because memory impairment and severe illness are common with CAR T cell therapy, we chose to interview parents and their children together to capture a cohesive narrative. This approach may limit participant disclosure from both the parent and child perspectives. However, we did not appreciate a difference in themes between those interviewed alone and those interviewed together. Despite these limitations, our findings expose opportunities for possible intervention and priorities for future investigation.
Children undergoing CAR T cell therapy and their families, like families pursuing other advanced cancer therapies, are at risk for distress from decision making, symptoms, and uncertainty. Supportive care practices that minimize the impact of these risk factors and support hope, trust, and self-efficacy are opportunities to improve clinical care and patient and parent quality of life.
Disclosures/Conflict of Interest: The authors have no conflicts of interest to disclose.
Acknowledgements/Funding: A. Steineck received funding through a T32 Training Grant (5T32CA009351-40) and the St. Baldrick’s Foundation. This work was supported, in part, by the Intramural Program of the National Cancer Institute, National Institutes of Health (LW, SS) and ALSAC (DL, DV). The authors gratefully acknowledge the study participants and their families, especially Patrick McSweeney, a patient advocate who volunteered to ensure fidelity of our study to the patient and family experience. We additionally would like to thank the patient care coordinators, research nurses, and data managers at SCRI, SJ, POB, NCI for their support and involvement in this work. The opinions reported herein are those of the authors and do not necessarily represent those of their funders. The content of this publication does not necessarily reflect the views of policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the US Government.