Getting feedback and the end of a clinical 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. But 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.

Sophie has had feedback about her personal results and has been promised a summary of what the…

Age at interview 23

Gender Female

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Taking part in the trial was a wake-up call for Hannah, and a realisation of how little she…

Age at interview 17

Gender Female

Age at diagnosis 4

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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.

Lauren likes to know of changes in her height and weight, and sometimes has to remind the nurses…

Age at interview 16

Gender Female

Age at diagnosis 13

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Even though his health is closely monitored, Alexander sometimes feels that personal feedback is…

Age at interview 18

Gender Male

Age at diagnosis 16

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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‘.

Joanna is near the end of a trial and is curious to know which drug she is taking and what effect…

Age at interview 17

Gender Female

Age at diagnosis 16

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For many young people, long-term follow-up will be a part of ongoing 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.

It was a relief at the end of the trial and the treatment, but Eden was pleased she had taken…

Age at interview 17

Gender Female

Age at diagnosis 16

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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.

At the end of the trial Alexander thinks he will be taken off the trial drug, but if his health…

Age at interview 18

Gender Male

Age at diagnosis 16

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Kay is hoping that if the trial drug proves to be of benefit, then she will be able to continue…

Age at interview 23

Gender Female

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At the end of the trial Stephanie is adapting to a different medication, but she doesnt mind…

Age at interview 18

Gender Female

Age at diagnosis 15

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Knowing the trial will help to guide further research into background insulin makes taking part…

Age at interview 16

Gender Female

Age at diagnosis 13

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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.

It would have been helpful if the researchers had told Ethan whether the trial had ended. He was…

Age at interview 12

Gender Male

Age at diagnosis 11

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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.”

Knowing how other people had done in the trial would be interesting to Stephanie, but she feels…

Age at interview 18

Gender Female

Age at diagnosis 15

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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.

Although Ruby receives some personal feedback at each hospital appointment, she is unsure if she…

Age at interview 17

Gender Female

Age at diagnosis 16

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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.

Sophie knew exactly when and how the results of the research she took part in will be published,…

Age at interview 23

Gender Female

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Mohini is pleased to know that the results of the trial are now published and a leukaemia…

Age at interview 12

Gender Female

Age at diagnosis 9

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Although researchers do try to keep you informed, it is a good idea to take an interest in what…

Gender Male

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Kay would like to know the results of the trial, but it may take a while to hear. Trials may show…

Age at interview 23

Gender Female

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Knowing he has taken part in trials that help others with cystic fibrosis is satisfying for…

Gender Male

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