Three main topical themes emerged from these patient conversations: (1) high expectations for CAR-T therapy, (2) positive recovery experiences with limited experience of outpatient recovery, and (3) the importance of safety considerations and close monitoring for outpatient recovery.

Theme 1: High Expectations for CAR-T Therapy

Participants who had discussed CAR-T therapy with their physicians noted that they were in frequent conversation with providers about their next treatment option. One noted, “I’m always looking ahead at what the next possible therapy might be, because I assume that I’m going to have another relapse.” Typically, they had been discussing CAR-T with their providers for several years.

CAR-T was seen as offering some unique treatment benefits, mainly the lack of ongoing therapy in the period immediately after receiving CAR-T therapy. Participants considering CAR-T called it “successful,” “effective,” and “fantastic,” and noted that it created a “deep response,” allowing patients to be “maintenance free.” One participant said, “I’m looking forward to having a pause in treatment and some quality of life come back to me.”

These participants noted that it is a complex procedure that requires monitoring (similar to stem cell transplantation), though a few said that the side effects from stem cell transplantation are more severe. They were aware of possible side effects, including seizures, tiredness, neurotoxicity/neurologic issues, and CRS, with most noting that patients who receive CAR-T therapy are typically admitted to the hospital for observation.

Study participants who had discussed CAR-T therapy with their physicians and those who had completed therapy reported typical travel times from their home to the CAR-T center of approximately an hour (though some traveled much farther); travel to a center is anticipated as a part of therapy. Those who had completed therapy reported making three to five visits (over approximately 3 months) to their CAR-T center before receiving the infusion.

Immediately before receiving the infusion, participants reported feeling either excited or nervous: excitement related to their hopes for CAR-T therapy’s effectiveness, whereas nervousness related to uncertainty over what might happen. In contrast, the actual infusion was described as “anticlimactic” or a “nonevent.” One participant said: “It’s the most anticlimactic thing ever, because you’re preparing for this all this time, and you put so much hope into it. … And as soon as they put it there and they plug in the intravenous therapies, the volume is basically lost in the tubing.”

Theme 2: Positive Recovery Experiences and Limited Experience with Outpatient Recovery

Participants who had completed CAR-T therapy noted that their center dictated their recovery options; inpatient recovery was most common, with only two participants reporting that they had the option for outpatient recovery. Only one participant began the recovery period in an outpatient setting (and was admitted on day 4 because of a fever). Most were required to be admitted for 1–2 weeks after receiving their initial infusion. After discharge, many were told that they needed to stay close to the center (e.g., in a nearby hotel) for an additional period of time.

All participants were very positive about their inpatient recovery experience and reported a high level of care. They said that nurses checked on them every 1–4 h (more often initially or if they were experiencing side effects) and that they were seen by a physician at least once a day. Although they were pleased overall with their inpatient experience, their most consistent complaint related to sleep, as frequent monitoring interrupted their rest. Participant comments about their care included “Top-notch. I have a really good care team…literally 24/7, monitoring me, checking up on me,” and “When I was in the hospital, it was pretty much anything I needed. I mean, if you’re hungry, thirsty, hot, cold—whatever you need, they take care of it.”

Of the ten participants who had undergone CAR-T, most (n = 8) reported mild-to-moderate side effects and hospital stays of 9–15 days. Mild side effects included fatigue, weakness, and low fever; moderate side effects included low blood pressure and liver issues. Two experienced severe side effects that necessitated longer hospital stays of approximately 4 weeks.

Overall, participants reported a positive experience with CAR-T therapy. They described it as “a good experience,” “a game-changer,” “very positive,” and “smoother than anticipated.” All participants said that, based on their experiences, they would undergo CAR-T therapy again. One participant noted: “Before CAR-T therapy, I probably spent 10 h, 11 h, more, a week, traveling to and from my doctor’s office, sitting and getting infusions. … My whole life was consumed. For the most part, I couldn’t make any plans. I couldn’t go places. I couldn’t travel because I was tethered to my infusions and my doctors. I mean, this is like getting your life back.”

Theme 3: Importance of Safety Considerations and Close Monitoring for Outpatient Recovery

Although participants tended not to have an option regarding where to recover, several were open to the idea of recovery in an outpatient setting. One participant who had discussed CAR-T therapy with their physician said, “I would have probably a lot of questions. … Is it safe to go home? Is it safe to stay here? What behooves me the best? What do the professionals think? What does my doctor think?” Another who had completed CAR-T therapy with only minor side effects noted, “If I were going to do this again, I would definitely do it outpatient. … Because I’ve been down the path, I know what to expect. I know what would be concerning.” However, the majority of participants who had completed CAR-T therapy were glad to have recovered in an inpatient setting.

Participants were asked to consider the perceived advantages and disadvantages of recovery in an inpatient versus outpatient setting (Table 1). Responses indicated that the primary advantage of inpatient care recovery was immediate access to care, along with a high level of monitoring. Participants who recovered inpatient after CAR-T therapy felt very safe in this setting, and the overall quality of care was seen as very high. One participant noted, “They’re trained to recognize the issues that come out of CAR-T, and if they detect something, (a) they recognize it, and (b) they can handle it right away.” In contrast, the main advantages of the outpatient setting were considered to be comfort and familiarity. One noted, “It’s certainly much more comfortable in your own home, in your own bed, and having just the comforts of that versus being in a hospital bed and … being woken up at all hours of the day and night.”

Table 1 Comparison of perceived advantages and disadvantages of CAR-T recovery in inpatient and outpatient settings

Study participants were asked to engage in a prioritization exercise to identify their primary considerations if given the option to select a recovery setting (Fig. 1). Their most important considerations related to safety, including the desire for immediate access to care and the ability to quickly address any potential side effects. A secondary concern was the overall care environment (including patient comfort) and impact on their caregiver (inpatient care was seen as less burdensome for the caregiver). Their least important considerations related to support services, as well as to cost and coverage. Although participants recognized that outpatient CAR-T therapy recovery reduces costs from a systems perspective, they saw that reduction as cost savings for the payer. One noted, “Affordable for whom? Because when you go outpatient, it’s putting a lot more burden on things that you don’t get reimbursed for.”

Fig. 1

Considerations if given the option to recover inpatient versus outpatient. Patients determined the importance of various considerations for whether they would choose to receive inpatient or outpatient care after CAR-T therapy. CAR-T chimeric antigen receptor-T cell

Participants were asked to identify key supports that they would desire in an outpatient setting. They were asked this question twice: first on an unprompted or open-ended basis and second in response to a prompted list of possible supports (Table 2). On an unprompted basis, they most often mentioned visits from providers to monitor their recovery, the necessity of a dedicated caregiver, and meal support. On a prompted basis, they were interested in almost all supports, including proper training and support for caregivers to monitor their care in an outpatient setting. Critically, they need someone with them who is trained to recognize emerging issues, and they need an immediate pathway to care should their condition necessitate a return to the inpatient setting. One commented, “I think the most important thing would be being able to access immediate medical help if it were called for. … Being able to phone somebody, a real person, and being able to talk to that person is very important.” Another noted, “You better have a nurse there for at least a couple days in the house until you stabilize. … You better have at least a caregiver in your home, someone there who knows how to dial 911 and won’t freak out or someone who knows how to help you take your temperature or whatever has to be done.”

Table 2 Desired outpatient support for CAR-T recovery

Because immediate access to care is seen as vitally important, patients recovering in an outpatient setting would be seeking either a direct contact person they can call for assistance (e.g., a caseworker or social worker) or a direct phone line to reach a healthcare provider who could help them access care immediately if necessary. One participant noted, “I wouldn’t want to have to call in and be placed on hold. … I would want a direct line to help if I needed it.”