How to complete the questionnaire
You will receive an invitation by email to complete the questionnaire a week before your appointment. This will also give you the opportunity to let us know what you wish to discuss during the appointment.
The care provider can read your answers before your appointment and will therefore already know about your child’s condition and what questions you have. Please think about your child’s health, together with your child. How they are feeling and whether their illness or condition is affecting their daily life. This will help you to prepare for your appointment.
Care that is tailored to your child’s needs
During your child’s treatment, you and your child will be asked to complete one or more questionnaires. This will give a clear picture of how your child is doing during the treatment and will answer questions such as: Are your child’s symptoms improving or getting worse? Is your child suffering from fatigue or pain? Is your child able to do everything they want to in their daily life? What is the outcome of the care your child is receiving?
This will enable the care provider to tailor the conversation better to your child’s medical and personal situation. It will make it easier for you and your child to discuss what your child wants and needs. Once you, your child, and your care provider know what is important, you can decide together on the care that suits your child best. The questionnaire facilitates this process.
Take Tim, for example. He was born with limited mobility in his right knee. As a result, he cannot extend his knee fully. The surgeon could operate on his upper leg, which would enable him to fully extend his knee and stand upright. However, this would mean that he would be unable to bend his knee, making it more difficult for him to ride a bike or sit in a car. Tim discusses what the best option is for him with his care provider and his parents
Step-by-step guide
You and your child will complete the questionnaire once every three months. You will receive an invitation to do this by email. Go to:
- The secure My Erasmus MC patient portal.
- Log in using your child’s DigiD. If your child doesn’t have a DigiD yet or if you have forgotten your password, go to www.digid.nl. If you need help with your application, go to an IDO (information point of the Digital Government). See www.informatiepuntdigitaleoverheid.nl for locations. It will take about three working days before you receive a DigiD for your child or a new password.
- You will find the questionnaire under ‘Tasks’. You may find several questionnaires there.
- You and your child will discuss the answers with the care provider during your appointment.
You can also watch our animated video about completing the questionnaire.
What do we do with the answers you give?
Your answers will be used to provide care that is tailored to your child’s needs
You and your child will discuss the answers to the questionnaire with the care provider. This will allow us to tailor the care even more to your child’s individual situation. Together with the care provider, you will choose the best possible treatment.
Your answers will help medical research
The information provided by you and your child is also very important for medical research into the best care for patients who have the same medical condition as your child.
The completed questionnaire will help care providers understand the course of a disease or condition in patients. If a patient is unsure about whether their symptoms are normal, the care provider can answer their questions. They can also show which treatment options patients are happiest with. We can continue improving healthcare by comparing medical research and questionnaires. And in the future, we will be able to better predict which treatment is the best choice for a patient.
Giving your consent
We will therefore ask you and your child whether we can use the answers you give for future studies on the disease or condition that your child is receiving treatment for and/or the specialist discipline involved in your child’s care. Parental consent is required for children under the age of 12. Children between the ages of 12 and 16 have the right to be consulted about whether they wish to take part in medical research. From the age of 16, children no longer require parental consent and they can decide for themselves whether they wish to give their consent. If you and/or your child consent to us using the data you provide, we will do so in an encrypted and anonymized form (without your child’s name). The choice you make will not affect your child’s treatment in any way.
Withdrawing consent
You and your child are free to withdraw your consent at any time. This will have no adverse effect on the treatment provided. To withdraw consent, go to ‘Tasks’ in the secure My Erasmus MC patient portal.
It is possible that studies may already have been published in scientific journals, for example, using anonymous data. We cannot retract these articles, but the data we have on you or your child will not be used for new or future studies.
National quality registers
There are a number of quality registers in the Netherlands, including at the national level. These registers are a collection of the medical data of patients and their experiences with various treatment methods. This allows access to the outcomes of a treatment and enables treatments to be improved on where possible. The data in quality registers are secure and cannot be directly traced back to you or your child as a person. Erasmus MC participates in various quality registers.
