El Parc Taulí and center of reference in the care of minority diseases in the Spanish State, forming part of five Networks of Clinical Expertise Units (XUEC) dedicated to endocrine minority diseases (adult and pediatric); respiratory (adult and pediatric), genetic-based cognitive-behavioral (adult and pediatric), neuromuscular (adult) and immune from the systemic autoimmune area (adult and pediatric).
The care of these patients is organized and structured from the Rare Diseases Unit which manages each of the functional units created specifically to deal with these diseases of low or very low prevalence. The professionals who are part of these units offer coordinated and multidisciplinary care, with the support of a unique structure for addressing these diseases with the Genomic Medicine Center and the coordination of professionals from the Child Development Center Early Care (CDIAP) and the Child and Youth Mental Health Center (CSMIJ) and CSM (mental health center).
One of the most stressful times for patients and their families is the transition from a pediatric patient to an adult patient. El Parc Taulí has both pediatric and adult specialists, they have specialist units that provide service at all stages of their lives. However, this process of change is a very important and delicate moment.
To guarantee the well-being of patients and families, from Rare Diseases Unit one has been started transition pilot test d'aquests patients from the pediatric stage to adulthood, which will last two years.
During this morning, seven families with patients aged between 16 and 25, have been visited by their pediatric specialists, together with the adult specialists, to carry out a check and transfer of information between the professionals.
This first visit was made to the pediatric outpatient clinics at Parc Taulí, an environment known to patients. The second visit will take place in the adult space, which will be the new space where they will be visited in this new stage of their lives.
"It is a two-year awareness project, both for our patients and their families. In this way, we guarantee that this change is progressive, ensuring the patient's well-being and minimizing situations of anxiety or stress. We also manage to establish bonds with your new specialist during this first visit", explains the case manager of the Center for Genomic Medicine, Núria Capdevila.
In this pilot test, patients from the Clinical Expertise Unit (UEC) in Genetic Behavioral Cognitive Disorders with Angelman syndrome, Prader Willi syndrome, Fragile X chromosome syndrome and sex chromosome alterations have been cited.
The specialists of the Rare Diseases Unit are already making a progressive transition of patients from adulthood to pediatric age but not synchronously, this year it has been decided to start this pilot test to unify the efforts of the professionals, who are different specialties, share experiences, minimize family transfers and present a more global vision of the transition.
"We started only with patients of 4 specific pathologies, which are the ones we have the most experience with. Our wish is to be able to do the same with all the patients of the different UECs that we have in the hospital", assures case manager Núria Capdevila.
The day was a success. Families and patients have been able to meet the specialists who will care for them during their adult stage and have begun to say goodbye to their pediatric specialists.
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