This PhD project aims to develop and evaluate an online value clarification tool (OnVaCT) to clarify patients’ values around end-of-life decisions and support them in the decision to participate (or not) in early phase clinical trials. These trials are experimental treatments in which the safety, tolerance and mechanism of a new (not yet proven) compound is investigated. Participating in such trials can offer patients reason to hope, but they generally do not benefit from participation and can risk severe side-effects. Therefore, it is important for patients to make a personal weighing to participate based on the available information and on one’s personal values. However, given the complexity of early-phase trials, focus on medical-technical information may prevail without a clear patient-physician discussion on patient values, actual prognosis and palliative care options. Decisional conflict (feeling insecure about one’s decision), has been reported in patients after deciding on participation.
The online value clarification tool is meant for patients (and their relatives) with advanced cancer for whom standard treatment options are no longer available. The idea of the tool is that it helps them to explore what is important to them in difficult end-of-life decisions. By using the tool in preparation of a consultation with the medical specialist, the patient may feel more empowered during the consultation, and the medical specialist can better attune the consultation to the individual patient’s needs. This may support patients in making a decision in line with their values, which might contribute to the quality of life towards end-of-life.
This project is a collaboration between the Erasmus MC Cancer Institute, the Radboudumc and the University of Amsterdam/ASCoR. Patients are included from the Erasmus MC Cancer Institute, the Netherlands Cancer Institute – Antoni van Leeuwenhoek, and the UMC Utrecht. The online value clarification tool is developed in collaboration with IJsfontein.
Research team:
- Liza van Lent, Erasmus MC (PhD student)
- Prof. dr. Karin van der Rijt, Erasmus MC en Prof. dr. Julia van Weert (promotors)
- Dr. Maja de Jonge, Erasmus MC en Dr. Jeroen Hasselaar, Radboudumc (co-promotors)
Status: Ongoing since 1 March 2018
Funding: Dutch Cancer Society (grant number: 11086)
Links:
Click here
Click here