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.