Children with cancer require careful monitorization and uninterrupted specialized long-term medical care.
As it is a rare disease (1 in 10,000 cases), in Romania there are 12 pediatric onco-hematology units, located in 8 out of the total 42 counties, sufficient for the number of cases in Romania. What is lacking are the specific local care services (close to their home) that children could benefit from.
Among these, only 4 counties (Bucharest, Cluj, Iași, and Timișoara), host a total of 7 specialized units for the specific treatment of cancer in children. In the other 4 counties (Constanța, Brașov, Mureș, and Dolj), there are 5 local pediatric oncology units with limited capabilities for comprehensive care.
During the treatment, the child is compelled to make countless trips to the pediatric oncology unit where they are treated, often located hundreds of kilometres away from their home. These frequent and long journeys demand physical and mental effort from the children, and for affected families; the financial burden is sometimes hard to bear, affecting the social, emotional, and educational development of the child.
The lack of monitoring and capacity of assistance outside the specialized units leads to their overburdening with services that patients could receive near their homes. This way, doctors could better care for children who require hospitalization in specialized sections.
Dăruiește Aripi Association proposes the creation of a national network of shared care for children with cancer, covering some medical services from the care plan established by the remote attending physician that can be safely performed in local pediatric oncology or pediatric clinics. Some examples could include: administration of supportive therapies, monitoring between chemotherapy sessions, sample collection, imaging, clinical evaluation, palliative care, all performed at the recommendation, with the instructions, and under the careful monitoring of the remote attending physician.
We aim to connect pediatric oncologists with pediatric specialists from local hospitals for the integrated team care of children with cancer.
The DARA platform we are developing is the tool that connects specialists and makes this team care (central-local) of children with cancer possible.
For example, upon discharge from pediatric oncology centers, the local doctor is notified and takes over the patient through the platform. The local doctor then follows the recommendations of the attending physician, which will be carried out in the local area. The results of the recommendations are recorded in the DARA platform and can be instantly viewed by the attending physician or any other doctor in the multidisciplinary team, via phone notifications, giving them the opportunity for quick intervention.