Patient OutcomePatient D met the requirements to enroll in the trial
Once patients embark on the trial, their experience is as important as the treatment itself. Patients face a range of challenges that can impact overall success.
After the trial, there are many possible outcomes depending on clinical and patient experience factors. Patients' journeys are singular, and the factor in common for all cell and gene therapy trial participants is that their pathway to, and following treatment, is unique.
What we learned about the journey to CAR-T therapy
1. Patients accessing CAR-T therapies usually don't have other treatment options:
Because many cell and gene therapies are still in their infancy, they are typically studied in people who have exhausted other care options.
People are too beat down physically by the time they get to CAR-T for the process to work. And we do see there's just better results of people a little bit younger and a little bit healthier and they have a little bit less tumor burden.
The caregiver's perspective
2. There is a big financial impact on patients accessing cell and gene therapies:
Many treatment regimes involve long inpatient or local stays (including for follow-ups), making it financially restrictive for some patients.
The only thing that it's cost me is not being able to work. I've lost income from not being able to work. As far as cost, from what I'm understanding, this is a trial and I have to put no out-of-pocket money for the trial or my insurance doesn't have to pay for this.
The patient's perspective
3. Personal support plans for patients are a must-have:
The testing, preparation, inpatient and follow-up requirements for cell and gene therapy patients is intensive, so a personal support plan is essential.
We do quite a bit of work in the background to bring the families together and to make them understand what degree of support is needed.
The HCP's perspective
4. Site staff are critical support for patients:
Because of the complexities of the patients and the procedures, the 'user experience' site staff provide is critical to seamless execution.
By explaining it to me, at least I knew what I was in for...if it's explained well, then they're going to understand it. And some people get it explained real well and some don't.
The patient's perspective
5. Post-trial support is imperative:
Survivors of CAR-T may not know how to adjust to being "cured".
A lot of people have been through the ringer, the cancer ringer...then they get through CAR-T and pretty much, they're in remission, so now, they've been a full-time patient for years, so now what? What do you do...how do you return to normality?
The caregiver's perspective
After the trial, there are many possible outcomes depending on clinical and patient experience factors. Patients' journeys are singular, and the factor in common for all cell and gene therapy trial participants is that their pathway to, and following treatment, is unique.
Scientists tend to create the proposed protocols for patients based on statistical probabilities, powering of numbers, and desired primary and secondary outcomes. Someone else needs to look at it from the patient experience perspective.
The HCP's perspective