Qualitative study of CAR T patients and caregivers

Introduction

Chimeric antigen receptor T-cell therapy (CAR T) offers potential progression-free survival among patients with hematologic cancer, but only 2 in 10 eligible receive the therapy. Previous studies

identified access to insurance, timely referrals from primary cancer care team, financial and time toxicity, and risk evaluation, and mitigation strategies (REMS) & caregiving requirements as primary barriers to CAR T. This study aimed to assess the patient and caregiver experience accessing CAR T therapy, especially the logistic and financial challenges associated with travelling to an academic cancer center for CAR T, care coordination across treatment centers, and the resulting psychosocial burden of therapy.

Authors

Erica E. Fortune, PhD¹, Abigail Newell,PhD¹, Maria Gonzalo, MS¹, Clair Saxton¹, Craig Cole²

1. Cancer Support Community, Washington, DC, USA
2. Karmanos Cancer Institute, Hematology/Oncology, Detroit, USA

Methods

We conducted an exploratory qualitative study including interviews with CAR T providers, policy experts, and navigators, as well as a focus group with CAR T patients and caregivers. Discussion topics were informed by expert interviews and covered treatment experiences, decision-making, caregiving, and unmet needs. Participants represented diverse demographics, cancer types, geographic settings, and care environments, with all receiving CAR T at academic centers. Data were analyzed using an iterative deductive-inductive coding approach in NVivo based on study aims and emerging themes.

Results

Participants reported significant barriers to accessing CAR T therapy, including insurance approval, caregiving needs, financial and logistical challenges, limited support resources, and concerns about side effects. Financial and psychosocial burdens—such as travel costs, time away from work, and caregiving stress—often persisted well beyond treatment. Experiences varied by care location, with those traveling to distant academic centers facing greater logistical strain and challenges coordinating follow-up care. While most participants felt receiving CAR T at local sites could reduce burden, some expressed concerns about community centers’ ability to manage complex side effects.

Conclusions

Patients and caregivers face substantial barriers to accessing CAR T therapy, including travel and lodging costs, caregiving demands, care coordination challenges, and concerns about side effects. Long-distance travel to academic centers further increases financial and time burdens for patients and their families. Expanding CAR T availability to community-based sites could help reduce these logistical, financial, and psychosocial challenges. Future research will explore access barriers in broader populations and examine experiences at community centers to inform policy efforts.

Keywords

Car T Treatment decision making/adherence Quality of life Symptoms and side effects