“Asthma Remission” seems to be a bit of a buzz word just now in both the clinical and academic worlds. It feels like this is the new focus as for years it was “curing asthma”. That cure remains elusive so is remission the next best thing.
I straddle a few different parts of the asthma world as a patient, advocate, research and clinical. Normally all these different facets align with what something is. This time with the concept “asthma remission” I find there is not much alignment particularly from the patient aspect compared the other parts.
In other conditions you hear the term remission particularly in cancer. It means no sign of the cancer and that the person is cured of it because they have gone through various different treatments and surgeries to it remove all. However, how is this really going to happen in asthma, we cant remove asthma and even with treatment people can be exposed to triggers which then need treatment to reverse the effects.
In the clinical and academic worlds there is no consensus as to what asthma remission is however what is evident is that their idea of remission is all numbers based rather than patient focused. It is frustrating when you sit in meetings about asthma remission and there is a lot of talk about us even though we are in the room sometimes it feels like because you cant measure our suggestions then they are not included.
Just now there seems to be 2 schools of thought for what asthma remission is.
- No medication required and the patient is asymptomatic with stable lung function.
- No exacerbations but is taking maintenance medication with no use of short acting beta agonists
These are 2 reasonable ideas for asthma remission is however they do not consider what the patient would be like in these 2 situations. A patient may achieve either of these things but what is the patient actually like day to day. Can the patient carry out their lives as they want to (within reason as we can never live exactly how we want to). There is no really thought for the patients quality of life. Often the focus is about medication reduction and getting people off medications but sometimes this can be at the sacrifice of quality of life.
Quality of life is sometimes a forgotten aspect when treating a patient but it is the biggest thing for a patient. A patient wants treatment to ensure they have a quality of life. If a patient with asthma is considered in remission then they need to be able to not have their quality of life compromised. If they are off medications they need to be living their life like they were when on medication.
One of the other factors in asthma is that because the condition has triggers so even when someone is very stable with minimal reliever use they can still have an attack which is started due to exposure to triggers that they were not prepared for or avoid. Attacks need treatment and often need some treatment for a while after them too so would this put them out of remission. Often these patients would bounce back to their baseline very quickly. Trigger exposure also needs to be considered when you are trying to determine what asthma remission is.
Patient understanding of what remission (once what remission is has been determined) looks like is so important too. Patients need to understand that if they are in remission and they have an attack or need their reliever inhaler they have not failed. Failure to a patient can have a profound effect on them and can impact them in a really negative way. It makes you feel like you have done something wrong and it is your fault you have not succeeded in what the Drs wanted to do. So it is key to make sure the patient understands that asthma is a chronic condition that you can be asymptomatic from or in “remission” but there is always a chance that something will happen that can result in symptoms coming back and you either need medication or need to increase medication (depending on what the definition of remission ends up being).
The idea of “asthma remission” is great however there needs to be a lot of work and consultation with a range of different patients to get a good understanding of what patients want as it is happening to us after all.
This might be a bit controversial but as someone with severe asthma which is still so misunderstood part of me feels like we are being forgotten or that severe asthma is too complex to try and understand so people are moving onto the next thing that might be more feasible to achieve. For years and years the focus was on a cure for asthma and there was always hope that one day there would be no more asthma but now this doesn’t seem to be on the radar so much. I know there is work going on to better understand severe asthma but many of those who are researching severe asthma are getting excited about the concept of remission but how can we look to achieve admission when we don’t understand the condition in the first place. This last bit is just my little rant and frustration.
ANONYMOUS-ASTHMA 