Clinical trials: Parents’ experiences

When the trial ends: feedback of trial results

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. Most parents we spoke to felt strongly that this was important, both for themselves and for their children. Parents were glad to see what their children’s contribution had led to and what it would mean for health care and other children in the future.
Some parents felt that when you get the results of a trial, it gives you a sense of being part of a wider community rather than just a number.
Sometimes results were presented at a dissemination day or at a conference. Although this is a good way to present results for larger trials to larger numbers of people, Rachel could not attend the day and did not receive any written information as an alternative.
Alison attended a conference at which parents were given feedback on a phase 1 gene therapy trial for cystic fibrosis. However, sometimes results may not reflect a person’s own experience.
Sometimes a trial does not show any differences between the comparison groups and this can be a little disappointing, as Alison explains.
Some parents preferred written feedback to verbal feedback. Alison’s son took part in a growth hormone trial and feedback was often given verbally at clinic appointments. She reflected “Having things written down is always a nice way to have results, as well as being told things orally, because you come back to them and you reread them and you look at them. And actually sometimes then you might have a question. And so I think you’re more likely to follow something through if something’s written down in a nice, easy to read jolly way.” It was also important to have results that used appropriate language/wording that both parents and children could understand.
Most parents wanted to know the results of the trial their children had taken part in. However, occasionally parents didn’t know when the trial ended and some were unsure if they were going to receive any results, or couldn’t remember if it was mentioned in the initial information they were given. Some also said they were not particularly bothered whether they found out the trial results as Ann comments' “It doesn’t really matter. I would like to know that it’s helped somebody or that it’s helped the studies. But it makes no difference, because I know I’ve made, at least we’ve made a bit of a difference. And helped as much as we can”.
Jane hadn’t really thought about getting the results until asked, and said: “I don’t mind. It wasn’t really discussed. I hadn’t thought about it... Yes, it’s probably important that it should be mentioned…It would be nice to know if it made any difference, wouldn’t it.”
Some parents were too pre-occupied with their children’s health to think about when they might get the results of the trial.
Some parents felt it was important that their children know that they had made a real contribution that would improve care for others. In many cases it can take time, sometimes years, before the results of a trial are published, because the findings have to be carefully analysed. Trials themselves may take years to complete. One mother was surprised to get a call asking her for further follow-up information as she thought the trial had already ended. Others commented on how a long wait can seem even longer for children.
Julie’s son was not eligible to take part in a trial but she says she would still like to know the results of the trial. She will probably keep an eye out for them: “Very often these things are reported in the media so you do find out about them a couple of years down the line.”
Laura and her baby have enjoyed taking part in the trial; she says it has been a “positive experience”. When the trial ends Laura would like to receive feedback on her baby’s progress as well as the overall results and whether they are going to extend the trial. She would also like to have some feedback on the genetic test her baby had as part of the trial and will ask at her appointment with the doctor at the end of the trial.

Last reviewed September 2018


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