Katie - Interview 54
More about me...
Katie is 13 years of age, attends a local school and lives with her parents and sister at home. She was diagnosed with cystic fibrosis at birth that affects her digestive system and lungs. Her mum responded to an advert in a journal about a trial that was taking place and asking for recruits. Katie’s mum rang the number provided and found out more about the trial and whether Katie would be eligible to take part. The trial was to test a new medicine that would be of benefit to Katie’s’ particular type of cystic fibrosis. She says that the new medicine is supposed to help reduce mucous in the lungs so you don’t get as ‘blocked up’ and help make you feel better too.
Katie and her mum went to the hospital and she remembers the nurses explaining everything to her and reassured her that she could stop the trial at any time. She was also told about possible side effects that included a rash. She says it was good to be informed about side effects so if she did get any of them you knew it was the drug and nothing else. Katie had some tests at the hospital to make sure she was eligible to take part. This is sometimes called ‘inclusion criteria’ or ‘eligibility criteria’. The tests included checks on her lungs such as a lung clearance index and lung function. She was pleased that she was able to take part.
She says that the trial is a randomised placebo controlled trial which means she may be allocated to receive the drug or the placebo. The trial is also double blind so neither the doctors and health professionals involved in her care nor Katie knew which group she was in. She says that she is glad she doesn’t know because then it is a ‘surprise’. She says that if she knew what medicine she was taking she may have tried harder and said things to make it sound like she was better, so not knowing is a good thing.
Katie has to go every two weeks for tests on her lungs, blood tests, and also completes a short questionnaire about her health and how she is doing. The tests don’t take too long, about two hours, and the trial is for about four months. She says that everyone at the hospital has been really nice and she enjoys going for her checks and being part of the trial.
However, Katie as been poorly and has had to stop the trial. The research team said that she can come back in the trial when her health improves. She will have to have some tests again to ensure she meets the criteria. She is hoping that she can rejoin the trial when she is better. She also gets paid for taking part. She has been paid half and receives the second half of the payment at the end of the trial, so she admits that this is a bit of an incentive for wanting to rejoin.
Katie and her mum responded to an advert in a science magazine. They emailed the researchers and...
Katie and her mum responded to an advert in a science magazine. They emailed the researchers and...
Katie took part in a phase 3 trial because she wants to see the new treatment approved in the UK...
Katie took part in a phase 3 trial because she wants to see the new treatment approved in the UK...
What were your key reasons for taking, wanting to take part?
Because I make sure the medicine, because it’s only approved in America at the moment, so we’re trying to get it approved in this country and Europe. So in the UK and Europe we’re trying to get it approved so people can get it, but because it’s for people that aren’t very well as well I think at the moment but we’re just saying what’s the point of getting it you have to wait to get ill first so we’re just trying to get it through for that because it’s well people they’re testing it on now. Because it’s in the third phase, the trial.
Katie's health had to be stable and her lung function and lung clearance index had to be in a...
Katie's health had to be stable and her lung function and lung clearance index had to be in a...
Because of an infection, Katie was advised to stop the trial. She didn't want to, but knew it was...
Because of an infection, Katie was advised to stop the trial. She didn't want to, but knew it was...
Katie was pleased not to know which drug she was taking, she may have tried harder to be better...
Katie was pleased not to know which drug she was taking, she may have tried harder to be better...
Katie said that everyone was really nice at the hospital and seeing the same doctors and nurses...
Katie said that everyone was really nice at the hospital and seeing the same doctors and nurses...
Katie had to attend the hospital every two weeks for tests and complete a short two page...
Katie had to attend the hospital every two weeks for tests and complete a short two page...
Katie knew she was going to receive a payment on completion of the trial and although she was...
Katie knew she was going to receive a payment on completion of the trial and although she was...
Even though Katie did not really experience any side effects she was glad to know what they might...
Even though Katie did not really experience any side effects she was glad to know what they might...