How Physiotherapy is Contributing to Cystic Fibrosis Research
Jennifer Edelschick, PT, DPT, C/NDT is an ABPTS specialist in Pediatric Physical Therapy with twenty years of experience in the acute pediatric setting. She is the coordinator for acute pediatric PT and OT at Duke Health and a Co-Director of the pediatric PT residency. She is passionate about helping children with CF live happier, longer, and healthier lives through exercise.
We caught up with Jennifer Edelschick to learn more about her cystic fibrosis exercise study as well as her overall experience using wearables and Labfront.
What inspired you to pursue the study of Cystic Fibrosis in particular?
My desire to work with patients who have CF started about 20 years ago. At that time, CF had a very different outlook than it does now. Physical therapy usually adds quality to your life. It allows you to increase your independence and gain back function or strength. I felt like this population was the one time physical therapy actually could add quantity to and extend your life. And so, I have felt passionate about it since then. Luckily, we have some fantastic medicines now that are changing the outlook for that diagnosis which is good.
Great, that leads to my next question. How far along are we in this field?
We have much bigger therapies that help correct the defect that is caused by the genetic mutation. Approximately 90% of patients with CF are eligible for this modulator therapy that can significantly help with all the problems associated with CF. While it isn’t a gene therapy yet, it does fix the consequence of the genetic mutation. Unfortunately, there are still 10% or so of the CF population where we haven’t found a modulator yet. The type of genetic defect that they have in that gene causes a problem that we haven’t yet been able to correct.
What led you to conduct your current research study?
I was hopeful that it could help motivate some of the kids to exercise that we have difficulty motivating. I give them information about what’s in the literature, but I think it’s different when I can tell them we did this study here with people just like them.
What’s your history with wearables? Had you used them before in research?
This was my first time.
Why did you choose to use smartwatches?
We did not want to rely solely on patient reports. I think it’s hard for patients to quantify and qualify the exercise that they’re doing. They’re doing things that aren’t sitting on the couch, but they’re also not things that would be considered exercise. It’s always challenging to get them to understand how high their heart rate needs to be for it to be aerobic exercise. We wanted to use the Garmin watch to a) Help educate them so they can see their heart rate and know what activities are helping them get into their target heart rate range and b) Allow us to get objective data instead of subjective exercise reports to look at how exercise is impacting their sleep, their mood, their pulmonary function tests, and their BMI.
Was the age of your participants varied?
Our age group was 10 to 25. We’re noticing 10 is a bit young for following directions for the study protocol. In the end, participant adherence often relied on the parents’ willingness to commit to the study protocols.
How do you see the current research project you’re about to finish contributing to the research and impact of the field?
We have a small number of participants so we’re considering it a pilot study. How can we use wearables to track this data? How feasible is it? In general, if it were a bigger study I think it would contribute to the exercise literature that’s out there. There are existing studies showing the benefits of exercise to this population, but almost all of them rely on the patients doing things at home. Some of them even have supervised exercise programs. In life, we’re not having supervised exercise for all of our patients. I believe it can give us important information about the role that exercise can still play in CF if you’re on a modulator as well as for the people who don’t have a modulator yet.
How has the Labfront data analytics service helped you?
We couldn’t have done this without Labfront. When we first talked to the Garmin team, they recommended using a service to help consolidate all of the data that we’re getting. We asked them to give us an example of what data might look like if we didn’t use a service. I think if we had a statistician or somebody on our team who was able to consolidate all of this information it would have been okay, but we don’t have a statistician working full time with us. We would not have known what to do. It is way too much data that you get through Garmin. Labfront pulls all of that data and reports it out to us in a usable way and they can give us averages for the week and totals for a day which is really all we want: How much time did they spend exercising at this heart rate today?
This was your first time using wearables in a research project. Could you share any lessons you learned that might help others conducting this type of research in the future?
I didn’t realize initially that you had to open the Garmin app a couple of times a week to get the Garmin app to download the data. I thought the Garmin app was always doing that in the background. Another issue we faced was that we had people doing aerobic exercise yet we were getting no exercise data from them in our target heart rate ranges. So we contacted Garmin and they let us know that the watch is more reliable if you manually start an activity. If you tell the watch when you’re about to exercise and tell it when you’re done, it gathers this heart rate information more accurately. We’ve now figured out we have to show them how to start an activity.
We are so thankful that Jennifer took the time to share her study and experience using wearables. We will be sure to provide an update on her findings when her research is published. Stay tuned!