What is changing and why ?
Find out more in this information download
Right now, we use a way to work out your ppFEV1 that includes your age, gender, height, and also your "race." But recently important groups of doctors and scientists from around the world, like the American Thoracic Society (ATS) and the European Respiratory Society (ERS), have looked at this method/ these measurements in more detail. They've said we should use a new, better way called GLI-Global. This new way doesn't use "race" anymore.
Here's why this change is so important:
- Old Ideas: The old way of working out ppFEV1 used old ideas about differences between people based on "race." These ideas aren't really based on how our bodies work, and the old way wasn't fair for everyone.
- Hard to Get Right: It was also hard to decide which "race" box to tick for some people as there weren’t many choices. Everyone is different, and many people have families from all over the world. This could lead to mistakes that affected your ppFEV1 and therefore your care.
- Fair for Everyone: The new GLI-Global way wants to make sure everyone gets a fair and equal check-up for their lungs, no matter where their family comes from.
How Will This Change Your ppFEV1 Number?
It's really important to know that your actual lung power (how much air you breathe out) won't change. This change is only about how we work out your ppFEV1 number.
The new way of working it out might make your ppFEV1 number look a bit different:
- If you were usually put in the "Caucasian" group, your ppFEV1 number will probably look a bit higher than before.
- If you were usually put in the "Asian" or "African" group, your ppFEV1 number will probably look a bit lower than before.
- If you were usually put in the "Other" group, your ppFEV1 number probably won't change much.
How much your number changes will be different for everyone. It depends on things like:
- How much air you can breathe out in 1 second (your FEV1): If your FEV1 is already quite high, your ppFEV1 might change more.
- Your gender and height: For women and people who are shorter, the change might not be as big.
This change could also affect if you can join a clinical trial (special studies for new medicines). Sometimes, you need a ppFEV1 within a certain range to join a trial, for example, between 40% and 90%. So, because of this change, some people might be able to join a study who couldn't before, and some might not be able to join a study they could have before. For example, if someone was in the "Asian" group and their ppFEV1 was 95%, it might drop to 88% with the new way, meaning they are now included in a trial that needed a ppFEV1 of 90% or below. But if someone was in the "Caucasian" group and their ppFEV1 was 88%, it might go up to 98%, meaning they cannot now join a trial that needed a ppFEV1 of 90% or below.
What Does This Mean for Your Care?
Even though your ppFEV1 number might look different, your CF team knows all about these new ways of working it out. They will still use your results, along with everything else they know about you, to give you the best and fairest care. We always want to make sure you get the best help.
We know changes can feel a bit strange. Your CF team is working hard to make this change smooth. They will be happy to talk about your own results and any worries you have at your next clinic visit.
This new way of working things out helps us make sure our care is up-to-date and fair for everyone.