Clinical trials & medical research

What is involved in a trial: appointments and monitoring

When you take part in a clinical trial it usually involves one or more visits to a hospital clinic, GP surgery or research unit. Sometimes an overnight or longer inpatient stay may be needed. How often you need to go and how long each appointment lasts depends very much on the type of trial and the intervention being tested. Visits may be either to get the treatment or intervention, or to be monitored to see whether the treatment is working and to check your health. Before the trial begins there may also be visits and tests to check that you are able to take part. (See also ‘What is involved in a trial: time commitment, costs and payment’.)
Healthy volunteers, for example in vaccine trials, often need very little involvement and sometimes the appointments are at the weekend which may make it more convenient for young people and their parents. On some occasions the researchers came to the participants' homes to take blood samples and give the vaccine injections, as was the case for Buddy below. 

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Most young people we talked to said that appointments were made at convenient times, or at the same time as their regular clinic visits, and some were able to change appointments to times outside school hours. One or two young people quite enjoyed missing time off school. (See ‘What is involved in a trial: time commitment, costs and payment’.) 
Young people we interviewed said how nice all the staff were and how nice it was to see the same doctors and nurses.
Some trials may involve treatments that can be taken at home, such as tablets or self-administered injections. This could make life much easier, although Joanna (below) pointed out that you do have to be quite well organised.
Occasionally young people said they had to take their medication on holiday.
Some young people took part in trials to help find the best approaches to help young people manage their health. These types of trials varied from one day interventions, staying in hospital, to completing questionnaires at the clinic or at home. Sophie, aged 12, was diagnosed with Type 1 diabetes when she was three. She recently took part in a randomised trial to assess the value of an intervention for use by clinicians to help young people manage diabetes and other long-term health conditions. 
In Sophie’s case above, the intervention was led by ‘adults’ and Sophie felt that this was good' “Because they’ve had more experience. They know more about it and they know what to do”. Sophie would like to take part in similar trials in the future. 
Joe was recently diagnosed with diabetes and took part in a randomised trial to assess hospital versus home management at diagnosis in childhood diabetes. This was his first clinical trial and he was allocated to stay in hospital for a few days.
Because Joe was coping really well with his diabetes, he stayed in hospital for three days as part of the trial, but he could have stayed in longer if he needed to. Now that he is at home, he is still monitored as part of the trial and attends three monthly clinic appointments at the hospital to see how he is coping at home.
Some young people attend a day ward at the hospital to receive treatments. Attending a day ward varies according to the type of trial. You may be in a room on your own or you may be in a room with other young people who are receiving a similar or different treatment. Jenna is taking part in a three-year trial on improving treatment for arthritis. She has been in the trial for one year and attends a day ward once a month, but at the start of the trial it was every two weeks. 
A cannula is a flexible tube inserted into a body cavity, duct or vessel to drain fluid or give treatment. Sometimes a small surgical procedure is done to give a drug through a ‘central line’ which is removed at the end of the treatment. Eden was diagnosed with Hodgkin’s lymphoma and took part in a trial that involved taking four different types of chemotherapy through a ‘central line’ inserted into the main vein in her neck. The treatment was in cycles of 5 days with 2 days off then 5 days with, 2 days off, and a final 5 day treatment. She was pleased to be attending a day ward with other young people of her age. 
Whatever the intervention, staff running the trial will probably want to monitor progress and this may mean attending appointments for tests and discussion, as well as for treatment. (See also ‘Side effects’.)
Knowing that they would be closely monitored was reassuring for many young people. Sometimes young people received calls at home from the doctors.
In addition to asking about your physical health and wellbeing, researchers may ask questions about your activities of daily living.

Questionnaires may be used to assess physical symptoms as well as practical things such as exercise, school and social activities, and to find out how someone’s emotions or mental state are affected. Saskia and Danny had to complete three questionnaires as part of a trial, and Danny was also interviewed by a research nurse. Both their parents also completed separate questionnaires.
Sometimes completing questionnaires prompted useful discussion with their parents.
You may be asked to record what is happening in other ways, for example, by keeping a diary or filling in a chart. Sophie took part in her first research study to test a blood glucose monitor called a Continual Blood Glucose Monitor System, specially designed for people with cystic fibrosis. 
Children who took part in vaccine trials had injections and blood samples to check what effect the vaccine was having. They were also asked to monitor their health at home, by recording changes in their temperature, redness or soreness around the injection site, and any other changes observed in their health. If they were concerned about anything they were asked to ask for medical advice immediately. As with many young people we spoke to, needles were a common dislike and this included having blood samples taken. 

Last reivewed March 2017.
Last updated July 2014.


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