Lorna Warwick, Lymphoma Coalition, Toronto, Canada, discusses the importance of education in improving confidence, understanding of side effects and knowing when to seek help and support for patients due to start CAR-T therapy. Minor side effects, which could have a big impact on patients’ lives, should not be overlooked when educating patients about CAR T-cell therapy. Additionally, patients should be given an explanation about the treatment they will undergo. Addressing these factors and ensuring patients are well informed about CAR T-cell therapy can result in better health outcomes. This interview took place during the 3rd European CAR T-cell Meeting.
Transcript (edited for clarity)
When we talk about the extra need for education, this comes from the fact the Lymphoma Coalition has done research that shows that more informed patients have more confidence. And when the patients are confident, they also have better health outcomes, as in, they understand how to manage their side effects by themselves, when they need to actually seek care. All aspects of their health experience are better if the patient is better educated...
When we talk about the extra need for education, this comes from the fact the Lymphoma Coalition has done research that shows that more informed patients have more confidence. And when the patients are confident, they also have better health outcomes, as in, they understand how to manage their side effects by themselves, when they need to actually seek care. All aspects of their health experience are better if the patient is better educated. And so, when we are looking specifically at CAR-T, we find that those patients are also less confident, to report feeling less confident than other patients that would match criteria for being treated with CAR-T. And partially we can understand because they have been treated before and the treatment didn’t work. So maybe they don’t have as much confidence in the healthcare system itself or the treatments that are being offered. And maybe they’re just not as sure about themselves and what they’ve been able to research about their treatment.
Education then is really important for this group. So it will help not only make sure they understand what’s about to happen to them, but also will help build their confidence. And again, make them patients that potentially would have a better outcome as a result. So when we’re looking at education for patients with CAR-T when it should happen with their care provider, or their caregiver as well, so we’re including their family and friends in this because it is a treatment that requires a team to make it work so successfully. Really, I think that patients seem to know quite a bit about CAR-T from what they’ve heard in the media, but realistic expectations on outcomes are important. And then when we get into the actual treatment itself, not only talking about the big side effects like CRS or neurotoxicity, but also making sure we’re communicating the maybe less medically significant things that may happen, but may cause anxiety for the patient.
And this goes into things like a loss of taste or issues with losing weight and how long this should continue and at what point they need to seek additional care. Muscle aches, skin irritations. When we’re talking to patients, they’re often more concerned about these things that are happening because they have not been discussed with them by their healthcare team. And therefore, they’re not sure if they’re normal. They’re not sure if they resolve on their own. They’re not sure if they need to seek additional help. They’re just really confused by these things. And then that again increases their anxiety. So talking about of course, the big side effects that may happen and the potential implications of those, but also talking about the little things so patients can learn how to cope and live with those and know how to handle them and know again, when to seek extra care and support.