Project
PROMs Transplant Care Project
In the PROMs Transplant Care project, healthcare professionals from all Dutch University Medical Centers (UMCs) are developing a uniform set of PROMs for nationwide use in transplant care.
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Together with healthcare professionals from all Dutch UMCs, we are developing a uniform set of Patient Reported Outcome Measures (PROMs) for nationwide organ transplant care.
PROMs are questionnaires in which patients indicate how they are doing themselves. They provide insight into their quality of life, health, functioning, and any complaints.
After an organ transplant, doctors often focus primarily on medical issues with patients. There is less attention paid to psychological and social changes in patients' lives. PROMs can help facilitate conversations about this.
What is the goal?
The goal of this project is to develop one national PROMs set for transplant patients. In addition to the PROMs set, advice is also being developed for implementing PROMs in clinical practice and in the Electronic Health Record (EHR) of the UMCs.
What does it offer patients?
Patients can fill out the questionnaires before an appointment with the doctor. This creates space for better and more targeted conversations about common problems after a transplant. It ensures that a patient's consultation can focus on the matters that the patient truly finds important or has indicated are bothering them the most.
Why a national set?
If all transplant centers use the same PROMs, the outcomes can be better compared with one another. This makes it possible to develop national quality standards and implement targeted improvements in care.
“For patients, it is important that they can pick up their daily lives again. Some suffer from side effects of medication, reduced libido, or depressive symptoms – problems they do not always find easy to talk about. PROMs help to make those topics discussable.”
Collaboration
The project is an initiative of the Dutch Transplantation Society (NTV) and the Dutch Transplant Foundation (NTS).
The PROMs set is being developed under the leadership of Coby Annema (UMCG), in close collaboration with healthcare professionals from all university medical centers in the Netherlands. Patient associations also play an important role in the project (NLV, NVN, PHLT).
Approach and planning
The project started in 2024. Development of the PROMs began in 2025. Once the complete set has been compiled and validated, it will be implemented in the organ transplant centers.
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