Clinical Trials

Appointments, monitoring, questionnaires

Taking part in a trial usually involves some visits to a hospital clinic, GP surgery or research unit. Sometimes, an overnight or longer inpatient stay may be needed. (See also ‘Time commitment, money and other practical issues’). This depends very much on the type of trial and the intervention being tested. For example, sometimes a treatment such as tablets or a self-administered injection can be taken at home. In other cases the intervention has to happen in a clinic or hospital, such as some types of chemotherapy, a surgical procedure or a screening test. (See also ‘Different types of trial’).
Whatever the intervention, staff running the trial will probably want to monitor your progress. This may mean attending appointments for tests and discussions, as well as for treatment. Many people we talked to enjoyed these visits and the opportunity to ask questions and learn more about their condition. They often found them reassuring.
As Pam and Phil found, building a good supportive relationship with staff can be an important benefit of being in a trial. Occasionally people described less satisfactory experiences.

As well as going to appointments, you may be asked to record what is happening in other ways, for example by keeping a diary, filling in a chart, or completing questionnaires, either on your own or with a researcher asking you questions.

In the next clip below, Amanda describes filling in a diary of her symptoms and recording bowel movements on a chart in a trial looking at irritable bowel syndrome.

Questionnaires may be used to measure physical symptoms and practical aspects of daily living, as well as to find out how someone’s emotions or mental state are affected.

Questionnaires and questionnaire design were a topic of much discussion. Several people said they could not see why certain questions were being asked rather than other things that seemed more important about their experience. Joanna also thought that patients should have been asked about discomfort during scanning, but this wasn’t included in the questionnaire.

Sometimes long term follow-up does not involve the patient directly but can be done using medical records or through asking the person’s GP.
Another thing which trial staff may want to monitor in a drugs trial is how well people are remembering to take their drugs. Sometimes people found it difficult to remember or found the tablets hard to swallow.
(Some medicines may lose their effectiveness if left out of their sealed packaging for too long. If you are thinking about using a tablet dispenser it’s best to check with trial staff first).

Last reviewed September 2018
Last updated July 2011


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