PROM stands for Patient Reported Outcomes Measures. ‘PROMs are crucial for obtaining insight into how children and parents feel and function,' says prof. dr. Martha Grootenhuis, research group leader and head of psycho-oncological care at the Princess Máxima Center. The initiator of the PROM Facility explains: 'PROMs can be used to gain insight into symptoms such as pain and nausea. But disease-specific outcomes, such as fatigue and cognitive problems, can also be examined using good questionnaires. PROMs give families an additional voice that helps optimize quality of life, an important part of our mission.’
Questionnaires in care
'At the Máxima Center, children and parents fill in questionnaires via the KLIK PROM portal, which has now reached more than 3,500 families,’ says Marloes van den Heuvel, PROM coordinator for care. ‘Together with the KLIK team, we support parents and care professionals in using the portal. Children and parents fill in questionnaires which are then discussed with the pediatric oncologist. This happens daily at the outpatient clinics and we are working hard to further optimize the use and added value.'
Questionnaires in research
Kelly van Bindsbergen, PROM coordinator for research: 'The data from the questionnaires for care can also be used for research. Researchers can administer questionnaires for studies and trials (with treatment protocols) via the KLIK PROM portal. For example, we can facilitate the selection of questionnaires, online administration, data deliveries, data processing and interpretation of outcomes.'
With the PROM Facility, the Máxima Center takes an important step in further embedding quality of life in its care and research for children with cancer.