Clinical Trials

Feelings when a trial ends

Sometimes trials involved only a one-off or fairly short commitment from patients, and for these people the end of their involvement was not much of an issue. However, in other trials people were involved for a longer time, and the trial became quite a part of their lives. The point at which the trial ended, or the individual stopped being involved, led to a mixture of feelings. This often depended partly on the kind of relationship between the research team and the patient.

People with long term or serious illness often commented on how being in the trial and having access to specialist care made them feel secure and reassured, so the end of the trial left them feeling a bit isolated and uncertain. Of course this can apply equally to the ending of any long term period of care, whether it is within a trial or not, but in Wendy’s case the trial meant her treatment lasted six months longer than it would otherwise.
Of course in many cases people continue to have long-term follow-up, but it may not be as intensive as the monitoring they have experienced in the trial. Joanna was also pleased that she was able to continue having ovarian cancer screening when the trial finished.
Some people described a mixture of relief and anxiety after the end of a trial. For others, their feelings were more just relief, perhaps because the trial had taken up a lot of their time or because of side effects or other discomfort. (See also ‘Side effects and queries about clinical trials’ and ‘Time commitment, money and other practical issues’).
Sometimes, as in Kate’s husband’s case, people who were in the placebo group may be offered the new treatment at the end of the trial if the results show it has been effective. (See also ‘Feelings about being in a placebo-controlled trial’). People who are receiving a new treatment as part of a trial may not always be able to continue on this treatment when the trial ends. It may be some time before the treatment is provided by the NHS, if it has been found to work. The information sheet given to patients at the start of the trial should make clear what will happen.

Several people commented on how important it was to know about the results of the trial and to find out what the effects of the treatment were. This is discussed in more detail in ‘Feedback of trial results’. It helped people to know that they had made a real contribution that would improve care for others.
Full trial results are often not available immediately, but David found some personal feedback made him feel much more positive at the end of the trial than he had expected.

Last reviewed September 2018


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