Why this collaboration?
Some children with cancer get problems with the functioning of their eyes. Ophthalmological care is no standard part of the treatment within the Máxima Center. Bartiméus can deliver specialized and continued care for certain patient groups. The main treatment is with the ophthalmologist.
Which patient groups are we talking about?
Children up to 8 years old with an optic glioma (optic nerve tumor), children up to 8 years old with visual problems due to other brain tumors in the non-acute stadium, and children from 8 years old that are hard to diagnose or anxious.
How many patients are involved?
The expectation is that this applies to a maximum of 10 children per month, with a maximum of 100 children per year.
Who is responsible for what care?
The treating pediatric oncologist of the Máxima Center is the lead practitioner for the pediatric oncological treatment, and therefore responsible. He or she will ensure continuity and the cohesion of care, the correct exchange of information and enough consultation between the caregivers involved. The treating ophthalmologist of Bartiméus is responsible content-wise, for his or her part in the ophthalmological care.
File management
Both the Máxima Center and Bartiméus have their own file regarding the treatment of the child. The starting point herein is that any reporting in these files must be precise, correct and complete. The Máxima Center and Bartiméus exchange patient data if that is relevant to the treatment. Three authorized professionals of Bartiméus have access to the electronic patient file (EPD) of the Máxima Center and work – aside from in their own file – also in the EPD of the Máxima Center. We do this according to privacy law and regulations, and according to the guidelines for information security within the Máxima Center.
Exchange of medical data for medical scientific research
At the start of the treatment in the Máxima Center all (parents of) children are asked if they consent to participating in scientific research. Collected data can be used for scientific research in the field of ophthalmological care. We do this according to privacy law and regulations and according to the guidelines of the Máxima Center. The Máxima Center is responsible for informing children and parents about scientific research that is to be carried out. The signed consent forms are saved in a central register and in the EPD.