Katie – Interview 54
Katie is taking part in a randomised placebo controlled drug trial. She was keen to take part, and feels special as there are only a few young people taking part in the UK. However, due to her health Katie has had to stop the trial for a short while.
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.