Clinical trials & medical research

Getting feedback and the end of a trial

Sometimes trials involve a one-off or fairly short commitment from young people. For these people the end of their involvement was not much of an issue. How people feel at the end of trials may depend on the kind of relationship there has been between the research team and the patient. All the young people we talked to had a good relationship with the research team and were pleased they agreed to take part. Young people we interviewed talked about the importance of receiving feedback about the trial. This included both information about their own health and how they personally had responded to the treatment, and feedback of the overall trial results. Some young people we talked to said how much they had learnt about their condition and hoped other young people would agree to take part in research in the future. 
Most of the time young people said they received some personal feedback but sometimes they felt they had to ask. Lauren is taking part in a trial on the side effects – wanted and unwanted – of insulin used when a low carbohydrate diet is followed in treating diabetes.
Some young people we talked to, who are taking part in randomised placebo controlled (blinded) trials, said they would like to know which drug they had been taking and how it had affected their health. (For an explanation of the different types of trials please go to ‘Different types of trials’; ‘Why do we have clinical trials in children and young people’ and ‘Understanding allocation (randomisation) to a treatment comparison group’.
For many young people, long term follow-up will be a part of on-going treatment, but this may not be as intensive, or involve such close monitoring. Of course this can apply equally to the ending of any long term period of care, whether it is within trials or not. This might be a relief, but sometimes young people could also miss the close contact with staff when they were part of a trial.
Several young people we spoke to were hoping that when the trial ended they could continue with the trial drug. Others had stopped the trial drug and were now taking their usual, or other, medication. In contrast, Lauren is hoping to go back to her original background insulin.
Many young people we talked to were unsure what would happen at the end of the trial, and for some the end of the trial seemed a long way off, and a few young people were unsure if the trial had ended. 
Several young people we interviewed remembered that they had been promised by the research team that they would be sent news of what the trial had found. Others were unsure if they were going to receive any feedback of the trial results, or couldn’t remember if it was mentioned in the initial information they were given. Some young people wanted to know if other young people taking part had improved health. 
Jenna doesn’t know if she will get any feedback of the trial results but says she would like to' “Yes, because ….my mum just said that I was a different type of arthritis. So it could have like had different effects on me and then like different effects on other people with different types of arthritis. So it would be quite interesting to find out.”
Ruby was diagnosed with Lupus when she was 16 and takes steroids as part of her regular treatment. She is taking part in a randomised trial to see if a medicine helps to prevent thinning of the bones when taking steroids. 
However, other young people we talked to said that getting feedback of the trial results wasn’t that important to them. For example Saskia said, ‘’I don’t mind really. I’ve not had any results…I don’t know really. It depends what the results were’. But they hoped that the results would help improve the treatment for other people with similar conditions in the future. 
Current guidance is that, at the end of a trial, the results are made available to everyone who took part, if they want them. They should also be published so that the wider community can use them to guide decisions about treatment and care. Of course, in many cases it can take time, sometimes years, before the results of trials are published, because the findings have to be carefully analysed. Trials themselves may take years to complete. Young people recognised this, but still felt they would like to know. Some of those with an interest in science and maths felt strongly that researchers should not assume young people (or their parents) would find it too hard to understand.

Last reviewed March 2017.


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