Better patient-doctor dialogue on palliative care and participation in early clinical studies by clarifying online what a patient considers important

Project summary

Incurable cancer patients are often asked for participation in early clinical trials. Early clinical trials are important to develop new treatments, however participation is not for every patient the best choice: in many cases there is no direct benefit while it may cause side effects. Patients participating in such clinical trials are less involved in preparing for their final stage of life and also use less palliative care (which is meant for a better quality of life during this final stage of their life).
In practice, most time with a patient is spent on explaining the methods of an early clinical trial and little on helping patients to make the difficult decision whether to participate or not.
This research intends to see whether a patient’s life values are important to make the decision to participate and, using the outcome to develop an online tool, whether it could contribute to help patients making this important decision.

The research into the involvement of a patient’s values of life in a decision to participate in early stage trials would help to determine an online tool to help patients making this decision and also see whether it would help patients by making this difficult decision during their last phase of their lives.