KLIK stands for Quality of Life In Kaart (Charted). Through the KLIK PROM portal, we ask you a number of questions up to four times a year. For example, about how you're feeling, how things are going at school, your interactions with friends, your energy levels, and whether you're sleeping well.
You can answer these questions at home on your computer, tablet, or smartphone. If you are younger than 8 years old, we ask your parent(s)/guardian(s) to answer the questions.
The next time you visit the clinic, you will discuss the answers with your doctor or nursing specialist. Your answers will also be seen by your care team. Thanks to KLIK, they can closely monitor how you're doing and ensure you receive the right support when needed.
Questions for parents/guardians
Shortly after diagnosis, we ask you to fill out a questionnaire about your family. Based on this and an intake interview, the medical social worker assesses whether support is needed and, if so, what kind. We then ask you to fill in how you and your family are doing every six months through the KLIK PROM portal, and whether you need to be in contact with someone from our psychosocial team. If you've indicated a need to contact a social worker or psychologist, they will then get in touch with you by phone. If you don't need contact and there are no remarks in the questionnaire, it will be reviewed by your social worker or psychologist, but no contact will be made.
Scientific research
At the Princess Máxima Center, we also conduct scientific research on the health and quality of life of children, adolescents, and adults treated or being treated by us. This research helps us map their quality of life and continuously improve our care and aftercare. The research is partly based on the data you already provide for care in the KLIK PROM portal. We always ask for your permission for this.
We do this before you or your child fills out a questionnaire on the KLIK PROM portal for the first time. For the research, we often also need data from the medical record, such as diagnosis and treatment. That's why we also ask for your permission to use these data. We handle the data carefully and confidentially, and the researcher cannot trace it back to your child.
Consent for research is entirely voluntary. You can also withdraw your consent at any time without having to give a reason. If you do not give consent, you can continue to use KLIK for care as usual. An example of the type of research we do can be found here.
The KLIK portal is also used to administer questionnaires for other scientific research. These questionnaires are separate from the questionnaires for care. If your child is eligible for such research, the researcher will contact you to explain the research and ask if your child would like to participate. The researcher will arrange the consent. You will receive an email when the questionnaires are ready.
Examples of research using the KLIK PROM portal can be found here.
More about scientific research at the Máxima can be read here.
* If you are unsure about giving consent, you can consult an independent doctor who is knowledgeable about KLIK research but is not involved in it: dr. Marc Bierings, 088 972 95 22.
Questions?
Contact the KLIK team. This is also the contact if you no longer wish to use KLIK.
We can also come to you if you're in the Princess Máxima Center. Just ask for us at the desk on the second or third floor, and we'll find you.