Welcome to LEEF Life Course Care

Appropriate care is an approach to ensure that everyone (also in the future) can receive good care. This is care that works well and where the patient and care provider make decisions together. It involves a change in our thinking about care. Less focus on illness and treatment, and more effort on health and what someone can do. In addition to the illness and treatment, attention is paid to the quality of life. Good care and a good quality of life are not just about physical health. We also look at how you are doing in daily life with hobbies, school, work, your family, and what the impact of the treatment has been on you and your loved ones.

To provide good care, it is important to know what care and support you need. It is therefore important to know what you currently think of our care, and what the effect of the condition and the high-intensity treatment is (or has been) on your quality of life. With this knowledge, we can better align the care with your wishes and needs, and thereby better support you and future patients.

If you would like to participate in this study, you will receive a questionnaire about your experiences with care following high-intensity treatment at the LUMC. Completing it is anonymous and takes approximately 15 minutes. There are no right or wrong answers; it is about your opinion and your experience. This questionnaire will be sent to you via email and you can complete it online. If your children are 12 years or older, we will send you two questionnaires: one for the child and one for the parent/caregiver. We are very interested in both opinions.

After completing the questionnaire, you may be invited to participate in follow-up research. This follow-up research delves deeper into the topics raised in the questionnaire. This could include an interview with one of the researchers about your experiences with the care. You can provide separate consent for this when you register for the questionnaire (see below).

Do you prefer not to participate in the questionnaire and/or follow-up research? That is perfectly fine! You are never obliged to participate. This will not affect the care you are currently receiving or will receive in the future. Participation in research is always voluntary. If you have given consent but no longer wish to participate, you can always withdraw.

Will you participate or would you like more information?

Have you or your child(ren) had one of these treatments at the LUMC?

• Treatment in the Neonatal Intensive Care Unit (NICU)
• Fetal therapy
• Heart surgery/catheterization in the first year of life for a congenital heart defect
• A stem cell transplant for a non-malignant condition

Then sign up via the registration form. You leave your email address. We will email you more information about the study and the online questionnaire.

Would you like to contribute to the development of the LEEF care pathway and provide your opinion a few times a year on new developments in post-treatment care and research? Then sign up for our patient panel. Everyone is welcome: parents, caregivers, children, young people, and loved ones.

What is the goal?

With the patient panel, we aim to improve care together with patients and their loved ones. Your experiences, wishes, and ideas are very valuable to us. By sharing your thoughts, you contribute to better care for yourself as well as for future patients and their families.

What does participation entail?

1. Thinking along digitally.

You can easily participate from home. A few times a year, you will receive an email with a link to a short online questionnaire. In these questionnaires, we ask for your feedback on topics such as a new brochure or your experiences with our care. Participation is entirely voluntary.

2. Active participation in a patient council

Would you like to be more involved? Then you can join a small group, our patient council. This group meets two to three times a year to discuss important topics. We ask you to participate for at least a year so that we can take great steps together. You will receive a small compensation and your travel expenses will be reimbursed.

Your data is safe

We process your data in accordance with the General Data Protection Regulation (GDPR). We use your email address solely to send you questionnaires and to inform you about the results. This way, you stay informed about how your contribution is being used. You can read more about this in our privacy statement .

Will you participate?

Sign up now for the LEEF! patient panel. Via the link, we will ask a few questions to get to know you better. You can also indicate how you would like to participate.

Sign up here for the patient panel.

Together we make healthcare better!