Improving Patient Treatment Experience: Research Insights
A recent area of interest in the AML and MDS research field, is determining what the primary endpoints of research should be, and if quality of life should always be included. Dr. Sara Tinsley Vance at Moffitt Cancer Center took time to talk to us about research she is doing in this area. Her main focuses lie in three areas: helping patients make informed decisions, focusing treatment on the patients goals and helping maintain and take care of the caregiver.
When patients are aware they have choices, and really understand the treatment options available to them as well as what the treatments will require of them, they can make better and more informed decisions for themselves. But, in order for them to make better decisions, both the doctor and the patient need to really understand the patient's long term goals.
Is the patient's main goal prolonged survival, or maintaining their quality of life? That question alone can help the patient start to weigh the pros and cons of treatment options. If the goal is prolonged survival, longer hospital stays and more intense chemo that makes them sicker, but has a better chance at putting them into remission may be the right option. Whereas, the same treatment might not be right for a patient whose goal is to maintain their quality of life. That patient might be looking for treatments that can be mainly administered at home and that centers heavily on symptom management. Researchers like Dr. Tinsley Vance have honed in on this important piece of patient care and want to make sure the patient is in the driver seat of their treatment.
Her last main research focus she shared with us centers around looking out for the caregiver. A lot goes into taking care of a patient with a disease like MDS or AML. Dr. Tinsley Vance talked about research she is a part of that is centering on trying to figure out how to best support the caregiver. When the end goal is helping the caregiver live a better and healthier life, which intervention is more effective? Their first option is spending increased time educating the caregiver on their loved ones' disease in order to help them understand what’s happening, what to expect, and how to be a better caregiver. The second option is a more intense focus on stress management that helps the caregiver better manage the mental and emotional toll that comes with being a caregiver.
The work Dr. Tinsley Vance is doing is important, and will have a big impact on the way we look at patient decision making and our support of caregivers in the future. Watch the video below to hear her talk about her research focus.
“I’m passionate about the patient experience, that's really what my research is about is helping the patients make decisions about the best treatment for them and that they understand their disease as much as possible. But also, like if I'm gonna get this treatment you're talking about, what does that look like, and then if I get this other treatment what does that look like.
Sometimes you can break it down easily into whether you're going to be in the hospital for a long time, or you're not. But really, the blood transfusions, the infections, you know really understanding that, but also looking inside and saying “okay this is how I am, this is what's important to me, which of those treatments match me best and what am I most interested in. Improved survival, even if my quality of life is poor, or do I want improved quality of life, even if I live a shorter amount of time.”
So, that's the research that I'm actively involved in and also how to support the caregiver. That's a protocol we're working on now to get up and running whether helping the caregivers manage their stress better would help them be better and healthier or if you taught them more about the disease, does that help them become better caregivers. So which is most important when you're trying to design an intervention to help the caregiver be healthy also. So those are the things I'm interested in and symptom science, like how can we best manage symptoms so that patients can get their treatment to get the best response that they can get.”
about the author
Mary joined HealthTree in 2022. She works as the AML/MDS Community & Education Manager. She is passionate about giving power to patients through knowledge and health education. If she can help one patient feel more confident participating in discussions with their healthcare team and making treatment decisions, she will feel like she has succeeded. When she isn't advocating for MDS patients, she loves being an aunt, attending concerts, and experimenting with new recipes in the kitchen.