For many clinical trial participants and their families, coming to the end of a trial can be an emotional journey.
Some can get anxious, fearful or lonely. If you’ve had the gold class clinical trial experience and developed a warm relationship with the research team, who have been your support for navigating parking, moving around the hospital, and more, as well as a friendly face, saying goodbye and being bounced back to the normal health system alone again can feel a little daunting. Further, if you feel your health has benefitted from the trial, you might be worried about losing that benefit.
On the other hand, some can be happy and thankful not to have to visit the clinic so often, have as many blood draws or go through procedures they’d prefer not to do, or get off a treatment that might not have been working for them or giving them side effects they didn’t like.
At the start of the trial you should have been provided information about what would happen at the end in the participant information sheet. But that might have been a while ago, so you may not remember, and may have lost the information.
So, before you get to the last visit, we recommend you start to talk to the research team about how your care will transition from the trial back to the normal healthcare system so you are prepared. In some cases, your trial doctor may be your normal doctor, and so you don’t have to fear the change in clinician, but you will probably have much less access and contact that you did before. If your trial doctor is not your usual doctor, find out how the trial team plan to update your doctor on what happened during the trial and anything they might need to know for your ongoing care.
Also ask whether the trial team plan to continue communicating with you, such as in sharing with you your results/the trials results or other research they are doing, or will put you on a database to be contacted in the future for research.
On a practical level, you will likely be asked to return all trial-related medications, devices, equipment, etc provided for the study, and the doctor will perform a final medical review for safety purposes. It is important for your own safety to complete the final check-up and follow any instructions the team have to transitioning off the trial treatment.
If you have questions at any time, and most importantly at the end of a trial, you should ask the researchers. They will be expecting questions.
If you are feeling a little anxious about coming to the end of a trial, or a little lost after leaving one, our ResearchGamechangers Facebook Group is an excellent place to connect with others and ask about their experiences transitioning out of trials, or even share your experiences for others to learn from. And our newsletters are a good way to learn about other opportunities to get involved in research, if you are interested in doing more.