Published on 01.07.2019
Léa, Jérôme and Pierre-Alexis* play a key role in the care of patients with rare genetic diseases included in clinical trials. These 3 mobile clinical research nurses at the clinical investigation center of Necker-Enfants Malades hospital (AP-HP) are attached to Imagine. They support patients within research protocols (in different clinical departments and consultation platforms at the Necker-Enfants Malades hospital), provide the connection between care teams and trial sponsors, and take samples for the research.
One of rarity
“It is quite unique as an approach to the nursing profession” highlights Jérôme. The 3 nurses go from one hospital department to the other and interact with patients with rare diseases (9,000 were listed). Many of them have no targeted treatment and they are therefore subject to clinical trials to improve patient care.
A vital link in clinical research
In 2018, 580 clinical studies including more than 7,000 patients were active within the scope of Imagine, including the reference centers for rare diseases, the clinical departments at Necker-Enfants Malades hospital (AP-HP), and both clinical investigation centers. They covered a wide range of genetic diseases - epilepsies, bone, skin, neurological diseases, etc. - and it is this diversity which also makes it appealing and distinctive to be a mobile clinical research nurse at Imagine, note the 3 professionals.
“In the context of clinical trials, we have to monitor the patients over several months, even years, Léa explains to us. What is great here is that we have time for them, to explain the tests to them and answer their questions.”
In the context of clinical trials, we have to monitor the patients over several months, even years. What is great here is that we have time for them, to explain the tests to them and answer their questions.”
Supporting and monitoring the families
So, when a mother and her two children come to the doctor for a test planned for the following day, the mobile clinical research nurses warmly welcome them right away and explain to them the sample that will be taken. Léa shows the little boy and his mom how to put a pain relief patch in place in order to carry out this sample. During this time, Pierre-Alexis asks his little sister if she will go with her brother the following day. In this way, a climate of trust is built.
It is important because some children undergo many tests as part of their monitoring. “Stress, even a phobia for some can quickly progress, describes Pierre-Alexis. It is then necessary to find tricks so that the child accepts the sample or test. It is no longer routine.”
Developing innovative care journeys
With the reference centers (Intellectual Disabilities, Developmental Anomalies and Constitutional Bone Diseases), these nurses have developed personalized care journeys for the children. “For these patients, a sample which could be taken in 5 minutes may require 45 minutes of preparation (confidence building, set up, negotiation, etc.), describes Jérôme. And any waiting causes additional stress. We planned a specific and dedicated journey, the use of a tablet to facilitate care and in a few months, a fitted out and dedicated space will even be created to facilitate the care of young patients suffering from problems with a disability.”
The mobile clinical research nurses also contribute to patient information. “When families come to us, they have already signed a consent form, explains Léa. However, we ensure understanding of this and go over certain points that need to be explained again.”
“It is an approach that requires a lot of adaptability, concludes Jérôme. As we have to adjust to the needs and the time of the research, keeping the patient at the heart of our concern, while being very independent.”
*After several years at Imagine, in 2019 Pierre Alexis decided to make the best use of his experience within another institution.