In every minute of every day, there are people around the world making a difference to finding out more about pulmonary fibrosis through research. This would not be possible without amazing patients who take part in clinical trials. Peter Spooner shares his experience with us, for taking part in the ATLAS trial.
How did you find out you had pulmonary fibrosis?
I was diagnosed with IPF by chance when I underwent a CT scan organised by the Cardiac Unit at my local hospital in 2018. During the scan I heard a member of the team say 'he's got scaring', a comment that meant nothing to me at the time.
What made you decide to take part in research?
In 2019, I unexpectedly received a letter asking if I was interested in taking part in a drug trial with the hospital research centre that was close where I live. Having given the matter some consideration I decided to take part as I thought that there may be a benefit for me. But as time has gone on, I have realised that the benefit will hopefully go a lot wider and help others diagnosed or those that will be diagnosed with IPF in the future. I realised that if the trial was a success it would benefit those following in my footsteps.
What were you asked to do when you were taking part in the trial?
I started the trial in November 2019 and was required to inhale 50mg of Pirfenidone (or so I hoped) daily, undertake a home spirometry test weekly and visit the Research Unit monthly. The hospital visit required me to provide blood and urine samples, a blood pressure check, examination by a doctor and have a more thorough breathing test.
As the trial progressed the daily dose became 100mg and then 100mg twice daily. The daily home spirometry tests, and monthly hospital trips were no longer required. The hospital visit changed to quarterly. When I started the trial I did not expect to still be taking part four years later.
What do you like or dislike about taking part in the trial?
The benefit of the quarterly hospital visit is that I have an opportunity to discuss any medical concerns I have with the doctor or a member of the research team. In addition, I know that in between visits I have people I can contact by telephone or email for advice - something that is not easily possible with my GP practice.
The only downside is that I leave each hospital visit with twelve boxes of the inhaled Pirfenidone medication that have to be returned at the next visit, either used or unused. I also leave with six nebulisers that again have to be returned at my next visit. The nebulisers are washed in warm soapy water after each use, flushed out every seven days and replaced after fourteen days use.
I am fortunate in that I live about a twenty minutes drive from the research centre. I receive a mileage allowance for each hospital visit and importantly, a parking permit and parking space to make things much easier.
Throughout my time taking part in the study, the research staff have been friendly, approachable and informative. I think that they deserve recognition as they are a key part of the research process.
How does taking part in research make you feel?
Taking part in the trial gives me a sense that I am doing something to help my health and provides a regular opportunity to monitor the efficiency of my lungs. Of course, should the outcome of the trial result in inhaled Pirfenidone being prescribed, I will have helped in benefiting others.
There are many recognised side effects of Pirfenidone in tablet form, I feel that I have been fortunate in that I have not experienced any side effects from the inhaled version. I consider myself to be very lucky to have an opportunity that, to date, appears to have benefitted my health.
We would like to thank Peter for sharing his story and taking the time to tell us what it is like to take part in a clinical trial. Without people like Peter, researchers would not be able to investigate and find better and more effective treatment options for people affected by pulmonary fibrosis.
If you are interested in taking part in research, please speak to your healthcare team and ask if there are any potential studies that may be a good fit for you.