Administering CAR T-cell therapy to younger patients requires ‘ongoing and open’ relationships
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Although chimeric antigen receptor T-cell therapies are being administered more frequently, they are still available only at a limited number of specialized centers.
In nearly all cases when children undergo CAR-T, at least one parent travels with the patient and stays near the infusion center for an extended period.
This typically requires 3 to 4 weeks away from home because of adverse events associated with the therapy, Rayne H. Rouce, MD, physician at Texas Children’s Cancer Center and assistant professor in the department of pediatrics at Baylor College of Medicine, told Healio.
A real-world analysis published last year in Blood Advances showed most younger patients experienced symptoms of cytokine release syndrome or neurotoxicity that would have required hospitalization after their CAR T-cell infusion.
Healio spoke with Rouce — who specializes in cellular therapies for younger patients — about the unique challenges that family dynamics pose when children undergo CAR T-cell therapy infusion and how clinicians can prepare for them.
“CAR-T is not something that is prohibitive, but it is definitely disruptive. It requires a large amount of sacrifice on the part of the families,” Rouce said. “It’s something that I think certainly takes a village, and the village is inclusive of people at the cell therapy center and back home.”
Temporary relocation
CAR T-cell therapy can present logistical obstacles for any potential patient, but the complexity of how it affects an entire family is unique to CAR-T when compared with conventional therapies for younger patients with cancer, Rouce said.
Having to coordinate care for children when it affects the entire family creates an additional layer of considerations.
“It's clearly a challenge. if your child has relapsed cancer, then you would go to the end of the Earth to find a curative therapy for them,” she said. “We sometimes struggle with how to provide this niche, personalized care and monitor toxicities while also recognizing it can be disruptive to family unity.”
Even at a large metropolitan center such as Texas Children’s Hospital, up to 40% of patients who receive commercial CAR-T are referred from locations up to 3 or 4 hours away, Rouce said.
Approximately 80% of patients receiving CAR-T in clinical trials are not from the local area. Some of these clinical trial participants travel from as far as the East Coast, she said.
Despite the distance, a parent accompanies each younger patient 99% of the time, Rouce said. This makes it “extremely difficult, not only for the parent and patient, but for other children in the family, as well,” she said.
This separation of families was evident even before COVID-19 restrictions limited accompanying caregivers to one per patient, she added.
Rarely does more than one parent or family member see the child being treated during the 1-month period after CAR-T infusion, according to Rouce.
This situation can be especially disruptive for single-parent families, especially if they have more than one child. These parents often require a network of support from friends and extended family or social services.
Even if the patient is located within proximity to the treatment center, the lack of in-person schooling in many locations amid the COVID-19 pandemic means some parents must arrange for care of their other children throughout the day.
“Most of the time [a] single parent will come with the patient and be extremely stressed because they are relying on someone else to be responsible for their other children,” Rouce told Healio. “There are these added social and logistical barriers that shine through so brightly in every visit and encounter.”
Forging new relationships
Establishing a connection with all parties involved with a patient’s care is the first and most important step to providing high-quality cellular therapy, Rouce said.
“I don't have a longstanding relationship with these patients,” she said. “The caveat is, I am meeting with them at a time where they have been told their [child’s] cancer is relapsed or refractory. We have not had the opportunity to know good times together. Our relationship is limited to them having relapsed or refractory cancer that requires them to get a therapy that is only recently approved for commercial use or as part of an investigational study.”
Most patients Rouce treats with CAR T cells have undergone years’ worth of prior treatments. This typically includes younger patients with relapsed or refractory B-cell acute lymphoblastic leukemia — the only FDA-approved CAR T-cell indication for pediatric patients.
These patients have an established relationship with their primary oncologist, but not with the clinician providing cell therapy, Rouce said. Often, the referring oncologist can feel helpless in situations where patients are sent off for cellular therapy at larger clinics, and so it is the responsibility of the cell therapy clinician to ally themselves with referring colleagues to deliver CAR T-cell therapy as seamlessly as possible.
“I make an effort to keep them as engaged as possible and create a care triangle,” Rouce said.
The triangle includes the referring oncologists’ medical and social work staff, along with cell therapy clinic, so that together they can “relieve some burden from the family and anticipate [their] needs,” she added.
“Typically, I build relationships with their referring doctor and set up a video or telephone conference with the family so I can get to know them,” Rouce said.
The process requires intense personal involvement, she said.
During these conference calls, Rouce asks parents questions about their family, including whether they have other children, their scheduling or logistical limitations and whether they have engaged the assistance of social workers back home who could give her a more comprehensive overview of the specific challenges their family faces.
Rouce recommended cell therapy clinicians be ready to talk to anybody about the CAR-T process and why it may be the best option for the patient. This could include anyone from the referring oncologist — who may not be well-versed in CAR-T — to grandparents, aunts and uncles, teachers or close family friends.
Cell therapy clinicians also should engage a patient’s local care team, including nurse practitioners and social workers, so they can stay abreast of barriers that a family might not articulate, Rouce said.
Delivering cell therapy requires more than a “one-time conversation,” Rouce said. Instead, it requires “ongoing relationships that have to be built.”
“This is how we have managed in the past — by keeping the relationships ongoing and open,” she said.
Reference:
Pasquini MC, et al. Blood Adv. 2020;doi:10.1182/bloodadvances.2020003092.
For more information:
Rayne H. Rouce, MD, can be reached at rhrouce@texaschildrens.org.
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