CAR T Treatment Center’s Policies on Caregiving and Symptom Monitoring

Introduction

Chimeric antigen receptor (CAR) T-cell therapy can offer durable response for patients with blood cancer, but Only 2 in 10 eligible cancer patients receive CAR T. One of the primary barriers to CAR T is lack of access to caregiving support to monitor symptoms, as most treatment centers require that patients be monitored for adverse reactions for weeks after infusion. This study described differences in treatment centers' policies around caregiving to improve navigation and support for patients and caregivers. 

This study was sponsored by Kite and Bristol Myers Squibb

Authors

Abigail Newell,PhD, Samantha Ammons, PhD, Belinda Paulicin, DSW, LCSW, OSW-C, Shannon Brown, MSW, LISW-CP, Erica E. Fortune, PhD, Caroline Offit, Elana Plotkin

1. Cancer Support Community, Washington, DC, USA
2. Oncology Education, Association of Cancer Care Centers, Chevy Chase, MD

Methods

94 healthcare providers representing 55 treatment centers completed our original survey between Nov 2025 – May 2026. Providers were recruited via direct email outreach through CSC’s CAR T Concierge navigation program and the Association of Cancer Care Centers (ACCC) membership. Survey participants reported: professional background and sociodemographic information, treatment center characteristics and geography, risk evaluation and mitigation strategy (REMS) policies, policies around caregiving for CAR T-cell therapy patients, supportive resources offered to patients and caregivers, and barriers to patients accessing care. Descriptive statistics and chi-square tests were used to identify differences in caregiving policies and procedures. 

Results

Finding a caregiver was the most common barrier to care reported by 85% of healthcare providers, followed by cost concerns (83%), and issues with insurance (69%) - with over one-third of providers (35%) reporting that caregiving sometimes or often prevents patients from accessing CAR T. Although most (80%) of providers require that patients have 24/7 caregiving support to monitor symptoms, only about half (53%) of treatment center’s offered training for caregivers of CAR T patients.  

Conclusions

Although most CAR T treatment centers required that patients have a caregiver to monitor symptoms, specific requirements and support for caregivers differed significantly across the U.S. Given that securing a caregiver was perceived as a significant barrier to care, patients face different challenges receiving CAR T depending on what treatment center they attend. Results show that we need more support for caregivers of people receiving CAR T, in addition to resources to help patients secure caregiving assistance. Peer-to-peer education among advanced practitioners in CAR T may help strengthen caregiving resources provided across ATCs and strategize how to facilitate caregiving support for patients with limited social support. 

Keywords

Cancer Experience Registry Access to care/healthcare utilization Caregiving Quality of care Social support and well-being CAR T