Contemplating participation in early phase clinical cancer trials: Integrating patient values in communication and decision-making through an online value clarifi cation tool intervention

Research output: Types of ThesisDoctoral ThesisInternal

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Abstract

In this PhD thesis, Liza van Lent describes the development and evaluation of an Online Value Clarification Tool (OnVaCT) intervention. The intervention aimed to support patients with incurable cancer and oncologists in the shared decision-making process for potential participation in early phase clinical trials (i.e. experimental treatments with uncertain outcomes).

Improving patients' decision-making process is beneficial for their quality of life. Particularly for patients with an incurable disease, such as those with advanced cancer, a well-balanced decision-making process can help them to spend the limited time towards the end of their lives in line with their personal values and beliefs. Consequently, integrating patient values in communication and shared decision-making is important.

Based on systematic literature review and interviews with patients, several relevant patient values were identified in the context of contemplating potential participation in an early phase clinical trial. These values, inspired by patients’ and oncologists’ personal experiences, were integrated into the OnVaCT with communication training. This OnVaCT intervention did not make the external circumstances of the decision less uncertain or complicated for patients: both before and after implementation of the intervention, patients experienced ‘decisional conflict’ (i.e. unresolved decisional needs, such as feelings of insecurity). However, the intervention has considerably improved the shared decision-making process in clinical practice. Specifically, oncologists involved patients more in all steps of shared decision-making, including the discussion of patient values and goals of care. This PhD thesis has thereby contributed to a better conversation and better shared-decision making process in which patient values are central.
Original languageEnglish
Awarding Institution
  • Erasmus University Rotterdam
Supervisors/Advisors
  • van der Rijt, Karin, Supervisor
  • van Weert, Julia C.M., Supervisor, External person
  • Hasselaar, Jeroen, Supervisor, External person
  • de Jonge, Maja, Co-supervisor
Award date19 Jun 2024
Place of PublicationRotterdam
Print ISBNs978-94-6483-847-3
Publication statusPublished - 19 Jun 2024

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