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Last updated: 04 November 2019
NHS RESEARCH IMPROVES OUTCOMES FOR PATIENTS WITH ASTHMA
Mrs Kathy Edwards, whilst attending one of her regular asthma hospital appointments, was invited to take part in an asthma research study.
She said: “I went for a check-up as my asthma was so bad, I literally couldn’t walk without using my inhalers. I was fed up constantly being on steroids, I was putting on another stone and that’s a vicious circle and then I was told that there was this trial that I might be suited to and do you know from that point I thought why not. I was given all the paper work, it wasn’t too medical at all, I read it and I gave it to my husband to read and we said that we couldn’t see anything to be afraid of, so go for it.”
Kathy was very impressed by the way the study team approached her and described the study and provided her with easily understood information about the study.
The Research Study
This asthma research study was delivered by the respiratory team at Portsmouth Hospitals NHS Trust (PHT) at Queen Alexandra Hospital in Portsmouth. The purpose of the study was to look at the safety of the study drug and how well it was tolerated by people like Kathy who presented with moderate to severe (or ‘persistent’) asthma. It was given every two weeks for two years on top of a person’s usual asthma medicines. The study was made up of the treatment period (up to 96 weeks) and a follow up period (16 weeks).
Sometimes, for people consenting to be part of a research trial, it can be a bit worrying. However, Kathy was very impressed with the level of medical and nursing care she received throughout the study period. When Kathy started the beginning of the treatment period she was reviewed by the study doctor for signs or symptoms of her asthma or any other medical condition she may have had.
Kathy was also happy with the on-going support and reassurance she received throughout the study. She received regular medical reviews including regular physical examinations and she also completed an electronic diary, where her asthma monitor results were monitored by the research nurse at her regular check-up appointments.
“Once or twice I mentioned I had a bit of heartburn or a headache and I asked if they thought it might be due to the medication and they would go away and look at the information for the study and they would keep an eye on it and see how it went and as sure as eggs are eggs within the next fortnight it would have gone. Every time I said I had felt something they would always come back to say they had checked and looked…very reassuring.
“Every fortnight when I went in they would go through every aspect of what they were going to be doing and what they had been doing. I was almost taking my own chair in because you knew after the first few time’s exactly what was going to happen. There was nothing different thrown in to surprise you. I was having my blood tested every fortnight and other things checked, what more could you want and for me, in all honesty and I know it sounds a bit like a cliché, it’s completely changed my life, the whole trial has completely changed the way I live, what I can do.”
However, there was one down side: “The down side was the weighing…don’t put me on the scales!”
When Kathy was asked what she though the overall benefits of being on the study were, she said: “I really cannot tell you the difference this trial has made to me. I couldn’t get up the stairs, I’d get to the top and I was having to use the inhaler. I was using my inhaler about 15 times a day and about 6 or 7 times at night and I was on steroids and now I don’t use my inhaler at all.
“We’ve just bought two puppies, 6 months old and I’m chasing around behind them, going for walks. I would never have been able to do that before, never. Am I a lucky one. So the benefits of the trial…I had peace of mind because of all the check-ups I was having, I was getting this regular MOT, it was clearly a win-win situation. I have never looked back from that day I joined the study.”
Through her personal experiences of being part of a research study, Kathy has some very clear views of the importance of research and the need to promote opportunities for people to get involved in research studies.
When asked what she would say to people thinking about going onto a research study, Kathy replied: “If more people knew the benefits and how easy it was, I am sure more people would sign up. What would I say to people is…if it looks like it could benefit your health or someone else’s health, I would just say go for it.”
If you are interested in taking part in a PHT clinical trial, you can get involved by asking your doctor about clinical research and whether it would be a good thing for you. You can find out more at http://portsmouthtechnologiestrialsunit.org.uk or you can contact firstname.lastname@example.org.