Giving back and telling the whole story with Folia Home Reported Outcomes (HROs)
Lynsey and Landon
Lynsey is a medical professional in Houston and mom to 18-month-old Landon. Lynsey has been part of the Folia community since 2019, and many of our product improvements come from her insightful feedback. In this blog, she shares how tracking on Folia ends each day with a boost of positivity, enables her to precisely tell their whole story in the clinic, and provides a way to give back to the CF community. She is hopeful about the future of healthcare which taps into the perspectives of patients and caregivers at home.
R: When Landon was first diagnosed with cystic fibrosis, what was some of the best advice you got?
L: Landon is now 18 months old and he was diagnosed at 2 weeks old. Of course, that’s a big shock when you’ve got a newborn. We were scrambling to do the best we could - find the best clinic, get him on any medication we could - so there was quite a bit of ongoing research.
One of the best pieces of advice was from someone at Texas Children’s when we called to ask about active research studies. He wasn’t eligible until he turned 6 months old, so we were told to “enjoy time with your new baby”. Looking back, it encouraged me to think how he is still a kiddo, he just needed a little extra attention.
R: How did you develop your routine?
L: I was grateful that one new treatment action was added at each clinic checkup - such as Chest Physical Therapy or enzymes - instead of all at once. So each time we came back from a clinic checkup, we would add one new treatment into Folia. We eventually got into a routine, but it changed a lot in the beginning. Folia data ended up giving us a lot of information, even though it was really quick to track every day. And tracking daily was one way that I could get everything down and then let go of that day.
Coming from a scientifically oriented mind, I started tracking consistently for two reasons.
It feels good to check things off the list. By tracking what’s been done that day, I’m recognizing the work I’m doing to keep Landon healthy and to keep his lung function as long as possible until they find a cure.
I can really develop an objective sense of how Landon is doing over a long period of time. It’s easier for me to precisely answer the care team when they ask, “how has he been doing?”. Instead of generic answers like “he’s doing okay”, I can point to the nice graphs from Folia and say, “he had 2 colds back to back, and he had one or two rough days with stool.”
R: Tell us more about how your observations help with your clinic visit.
L: It takes only a few seconds a day, and yet my Folia data tells the whole story.
When I see a lot of data, I’m super happy because I see its value. It might take some time to process Folia data because there are so many layers (treatments, symptoms, and measurements). And yet, working together with the care team to interpret the comprehensive data and figuring out the best care plan is a vast improvement from generally answering "we’ve been doing well." As long as the Folia data is presented in your clinic, we’re already ahead of the game.
“Working together with the care team to interpret the comprehensive Folia data and figuring out the best care plan is a vast improvement from generally answering ‘we’ve been doing well.’”
R: What are some benefits of tracking symptoms?
L: We’re thankful that a lot of people ahead of us in the CF community made it possible for us to have the medication today through clinical trials. But there’s still a lot of unknowns. For many medications, we’re learning their efficacy as we go, especially since CF has such an individual progression for each patient.
For example, pancreatic enzyme dosage changes a lot. There’s a debate on whether the pancreatic enzymes should be dosed by fat grams or by weight of the patient. To get more information, I’d like to see enzyme dose with relevant symptoms over multiple time periods.
Folia fits really well for inputting customizable, flexible medical treatments and symptoms. There are plenty of medical apps for drugs, but CF and other conditions are so much more than just taking drugs. In addition to tracking medications, we also have to watch symptoms and figure out how to change the medications based on those symptoms.
“CF and other conditions are so much more than just taking drugs. In addition to tracking medications, we also have to watch symptoms and figure out how to change the medications based on those symptoms. ”
R: When Landon becomes a teenager, how would you coordinate tracking together on Folia? How would you respond if he asks, “why would I track on a good day?”
L: When I first got started, the Folia rewards program got me going. When Landon becomes a teenager, I would do whatever I could from a rewards standpoint for Landon to track his own symptoms, especially since he’s living it.
To respond to the question “why would I track on a good day?”, I’d say, “Because it is a good day!”. It gives me a little boost of positivity at the end of the day to be able to track “No coughing today” and think to myself, “That’s awesome. We’re not fighting a cold today”. Also, batch track takes the pressure off - you don’t have to track every day. You can track multiple days at once.
R: What was your reaction to Trikafta getting approved?
L: Landon is currently taking Kalydeco (one of the CFTR modulators), and we’re hoping that’s helping to some degree. Hearing about the approval of Trikafta gave me a lot of hope. We’re hoping to get on Trikafta in a couple of years. The hope for us is that since he’s so young, he can start this promising medication before any significant damage happens. Of course, it’s awesome to hear that those who experienced declining lung function are improving. That hasn't happened with other treatments. One day, he might not have to do Chest PT or take enzymes! With the development of gene therapies, hopefully CF patients will just have to take a couple pills each day and stay healthy.
R: What else gives you hope?
L: I’m involved in the CF community through the CF Foundation. I was at a CF fundraising event and sat down at a table with other CF parents. It’s just nice talking to other people who live in the same reality as me - to laugh about things the kids do that are “normal”, and to laugh about things that the kids do with the vest, nebulizer, etc. that wouldn’t make any sense to other moms or dads.
I’m very thankful to be part of a train that’s already rolling, with such an active foundation and so many people who have gone before us. From the ground up, it’s been the parents that funded and pushed for CF research back in the 60s. Everybody contributes and therefore research is advanced. Everyone is in it together.
R: Is there anything else you want to share with the Folia community?
Jason, Lynsey, Madelyn, Landon
L: I look at Folia as a way to give back. You’re already starting with the HomE-Reported Outcomes (HERO) study, but I foresee Folia becoming a big part of the community. It’s already linking the CF centers with the patients and giving doctors more information. It looks like the CF Foundation is moving that way - of course, they’re researching drugs, but also it seems like they’re now trying to research symptoms. They’re trying to figure out questions like “who has GI issues? Lung issues? What are the best treatments? When are we going to give antibiotics?”. It seems like the CF Foundation is now focusing a little bit more on the patient side and symptoms, not just keeping people alive. People are living longer, so they can focus on best practice.
I think Folia is going to be at the forefront. People who jump on board are already part of research, you don’t have to be in a drug trial. You could just be tracking everyday life and providing a lot of information down the road to the researchers who are trying to figure out the best practice for each category of CF patients. I see tracking on Folia as a way to give back to the CF community, as a daily motivation for me, and as a way to show the richness of data to doctors that comes from only tracking for seconds each day. The fact that the Folia team is so responsive and always changing and looking to the community for the best way to proceed - Folia is going to go far. I think Folia is going to become a big player in the CF world.
“ I see tracking on Folia as a way to give back to the CF community, as a daily motivation for me, and as a way to show the richness of data to doctors that comes from only tracking for seconds each day. ”