- Introduce yourself and your role(s) and position(s) within EBMT and outside of EBMT
I’m a senior nurse in a paediatric SCT unit in Belgium. I started in 1996 as a nurse. In 2004, I became involved in writing SOPs. When we wanted to apply for JACIE, I also became a quality manager. After receiving the accreditation I went back to more nursing tasks and became a nurse consultant for the patient and their family.
In 2010 we started a post SCT multidisciplinary clinic and started a structured follow-up for all our transplanted patients from the first years. It is because of this clinic that my interest in complications started to become a big issue.
Because of the small clinic (20 SCT a year) I can combine different roles in the SCT path for the patient and their family. So I know the patient very well and I'm a very low burden to contact even after transitioning to an adult clinic.
Currently I’m again a quality manager, also a data manager and a SCT coordinator. In this way I’m involved in the whole process of the SCT in our unit.
I applied to become the Nurse Representative of the TCWP in 2020. The first year of the COVID pandemic. Despite all efforts and new medication, patients can have transplant related complications early and in the future. By participating in this Working Party, I want to point out our role as nurses in this story.
- What are the main activities - in terms of research and education - that your Working Party has been leading? And is there a memorable project that you would like to highlight?
We all want to control the related illnesses and death to the SCT procedure. It is very sad that your illness is under control but you die from a complication related to the transplant procedure.
I saw, in my early years, patients dying because of VOD. Almost every child with a severe VOD didn’t recover and died by Multiple Organ Failure (MOF). Now, there are medications to control and cure this side effect due to all kinds of studies. Even then, the TCWP still works on this side effect with new studies. That is what I admire in this Working Party. They set up studies to find less toxicity conditioning regimes, suitable medication to treat side effects and collateral damage. But all kinds of side effects are taken care of in this WP, even psychiatric disorders. This is the strength of the WP. As a nurse, I feel welcome in the group. I can contribute to the physicians.
I find it very important that the patient also gets a voice. They survive and have to live with the complications. This WP gives a voice to them too.
- And are you facing any challenges or trends within your field that are affecting any current/on-going projects within your Working Party?
Because of new treatment strategies, new agents, patients are treated more and so it is assumed that there can be more side effects early and later due to this treatment.
The overall survival is longer and more people survive for decades. Especially in children, it is very important to give guidelines for the future. Risk management and self-management for patients treated as a child and becoming an adult, are very important.
Children who survive, have a whole life ahead of them. By giving good advice and low burden contacts, they can live without fear of what can come and with an awareness of what healthy living means for them.
- What are your main goals in the near future?
I want to help develop a well structured post SCT clinic with the mean concern the early detection of early and late complications.
The transition is a subject that I’m very involved in. As a nurse involved in this process, I see burdens on the patient side but also at the side of the physician in the adult clinic.
- Can you tell us what membership of your Working Party looks like? What do members of your Working Party get to do?
I’m very glad to be a part of this WP. Being part of our WP allows you to meet with other centres and other people, other professions. They all give me the feeling that we, as nurses, also have a voice even in this very medical story. The membership allows you to go to more congresses and take an active part in it. I’m invited to the meetings online. In these meetings, new studies are introduced. Other studies are explained.
- What would you like to say to encourage young investigators / trainees to join your Working Party?
The Transplant Complications Working Party provides knowledge and the opportunity to interact with other experts in the field.
Visit the TCWP webpage for more information.