PREPARE : Development, Testing, and Implementation of the Belgian Patient Reported Experience Measure for Pancreatic Cancer Care

Project duration : 01 January 2023 - no end date

Lead Coordinator : Sciensano, Belgium

Domain / Area : Diagnose and Treatments, Monitoring and evaluation, Patient-centered care

Main objectives

In short

Patients with pancreatic cancer do not feel involved in the development of their treatment and care plans. In Belgium, these plans are decided on during multidisciplinary team meetings. However, limited time is spent on the discussion of the preferences of the patient during these meetings. This research project aims to develop a tool for measuring experiences of pancreatic cancer patients and assess if its use can support collaborative treatment decision-making and improve person-centered care.

Project summary

This project aims to improve person-centered pancreatic cancer care in Belgium. Three subobjectives are pursued:

  1. to develop a patient-reported experience measures (PREM) to assess the experiences of care-related aspects in pancreatic cancer care, 
  2. to validate the PREM, and
  3. to develop and evaluate an educational intervention to support the use of the PREM’s results. For the development of the PREM, an exploratory mixed methods study design will be used.

The study will start with a survey followed by a telephone interview involving patients with pancreatic cancer and digestive oncology health care professionals. The following study is the testing of the content and construct validity of the PREM. The final study involves the implementation study according to the Medical Research Council framework of a complex intervention introducing the PREM in practice. The effectiveness (the effects it has on the treatment response; the changes to patient health behavior; the changes to clinicians’ management of the patient; and the improvement of health outcomes) of the intervention as well as the experience of the patient will be investigated using a pragmatic randomized controlled trial study design.

This research project takes place in Belgium where decision-making processes on care and treatment plans take place in different types of multidisciplinary team meetings, but where treatment preferences of the patient are not very well taken up. This observation calls for interventions that support and facilitate the patient’s voice during consultations. Moreover, in Belgium, a PREM for pancreatic cancer is not available. Developing a PREM incorporating the experiences of patients with pancreatic cancer adapted to the local context increases the specificity of the measurement tool and consequently its ability to capture the true situation of this patient group.



  • Régine Kiasuwa Mbengi and Sofie Theys – Sciensano – Kankercentrum
  • College of Oncology
  • Free University of Brussels