Expertise point questionnaires: PROM Facility
The PROM Facility is a central place to coordinate, facilitate, optimize the use of data from questionnaires for care and research, and to further develop our expertise.
Within the Princess Máxima Center the use of questionnaires for care and research via the KLIK PROM portal is increasing considerably. This requires a central place to coordinate, facilitate, optimize the use of data and further develop our expertise. This makes the PROM Facility unique, and once again demonstrates the innovative strength of the Máxima Center in integrating care and research.
Importance of questionnaires (PROMs)
PROM is another word for questionnaires: Patient Reported Outcome Measures. PROMs provide insight into how children and their parents and (young) adults feel and function in daily life. This concerns aspects that are not objectively observable, but that can be measured with questionnaires, such as pain, fatigue and anxiety. With PROMs you give families an extra voice so that we know better how they are doing, which contributes to better care and research, and thus to quality of life.
What does the PROM Facility do for you?
The PROM Facility has expertise in questionnaires for care and research, and can provide advice and support to you as a practitioner or researcher.
Use of questionnaires at the Princess Máxima Center
The use of questionnaires at the Máxima Center can be divided in 5 areas of application:
1. Questionnaire is regular care
Regular care works with the KLIK intervention to map out and discus show the child and their parents and (young) adults are doing. More information about the KLIK intervention, also called KLIKKEN, can be found here.
Children and their parents or (young) adults complete questionnaires about the child's quality of life up to four times a year. The practitioner sees the results in HiX and discusses them during the consultation.
Parents are asked on the basis of questionnaires no more than twice a year how they are doing and whether there is a need for support from a psychologist or medical social worker.
2. Questionnaires at specific outpatient clinics
In addition to the questionnaires in regular care, additional lists are administered for certain diagnosis groups, for example about mobility in the outpatient clinic for bone tumor patients and about cognitive functioning in brain tumor patients (the BrainCARE program).
3. Questionnaires from care for research
Questionnaires from care can be used to answer research questions about the quality of life of patients with for example a specific diagnosis or treatment. This data could also be linked to for example data from your own research. The questionnaires and data that are available, can be found here.
4. Questionnaires in studies / 5. Questionnaires in trials
In addition to using data from health care, you can contact us to complete questionnaires for your own research and for trials (connected to treatment protocols). We can facilitate this by for example helping you select good questionnaires, administering questionnaires online via the KLIK PROM portal, supplying data, and processing and interpreting the results.
If you have any questions, please contact us. To use our service, you can submit a request via this intake form.
Contact persons
Coordinator care: Marloes van den Heuvel
Coordinator research: Kelly van Bindsbergen
Head of PROM Facility: Martha Grootenhuis