Navigating Acceptability: Evaluating patients’ perceived assessment burden of PROMs in oncology (NAVIGATE)
Project summary
Recent research on patient-reported outcome measures (PROMs) has led to the development of more specific and extensive measures, along with the introduction of item libraries. This raises the question of the acceptable number of items to ask cancer patients enrolled in clinical trials. It is essential to balance the number of items included in the PROM with the patients’ perspective on the potential burden of repeatedly completing these measures, while ensuring the PROM captures the relevant issues for the specific patient population in the trial. The acceptable length of a PROM may vary across patient groups and contexts.
The primary aim of this project is to gather evidence on the acceptable perceived patient burden, with a particular focus on the acceptability of number of PROM items, associated with EORTC PROM completion in cancer clinical trials. The results of the study could potentially inform the development of new modules and offer guidance for creating assessment batteries for clinical trials. The ultimate goal is to develop guidance on the length of PROMs to be used in cancer clinical trials and to ensure their acceptability across patient groups.
Achievements
Project started successfully and initial review ongoing.
Conducting literature review on patients’ perceived assessment burden caused by the completion of PROMs.
Future plans
Complete and publish literature review in 2026
Conduct patient interviews in 2027
Conduct cross-section field study in 2027 and 2028
Publish guidance on questionnaire length and patient burden in 2028
For patients
When doctors and researchers test new cancer treatments, they give patients questionnaires about how they feel. These forms can be very long, and answering lots of questions over and over can tire people who are already unwell. Yet, if the forms are too short, important details about a patient’s wellbeing might be missed. This project aims to discover how many questions feel “just right” for cancer patients. By listening to patients’ experiences, we’ll learn what feels easy or hard for them and create gentler questionnaires that still give doctors and researchers all the information they need.