Better Coordination of Information for Files of Young Patients with Disabilities

Context

Care of young patients who have disabilities or chronic neurological disease is even more complex because it involves multiple players: family, school, care institution, pediatrician, occupational therapist, radiologist, day care, etc. All these sources of different information, and for the most part follow-up goes beyond hospital discharge. On top of punctual medical appointments, a solid and stable connection should thus be maintained between the family and the other players.

Project

The project entails establishing a hospital point of contact for two years to ensure this connection. The profile is that of a specialized nurse. In charge of coordinating the different players involved, transmitting the correct information, and standardizing it in function of context, this person also prepares children for care in adult medicine. The role is that of a facilitator, as much for the patients and their families as for the hospital and the institutions involved. The efficiency of this part-time post will be evaluated by a satisfaction survey given to parents and institutions. A register of duties for the position will be created later by the HUG.

Où en sommes-nous ?

Septembre 2019 : Le projet est désormais terminé avec succès. Un groupe de référence constitué de soignants et de médecins, a été créé aux HUG et est dédié aux patients de la pédiatrie touchés par un handicap. Leur prise en charge est désormais personnalisée et coordonnée par ce groupe. Des collaborations étroites sont également effectuées avec des partenaires externes accueillant ces patients.

Project managers

Dr. Christian Korff, Deputy Head Physician and Clinical Professor, Unit Manager, Pediatric Specialties Division, Children and Adolescents Department, Geneva University Hospitals.

Dr. Joël Flüss, Deputy Head Physician and Clinical Professor, Pediatric Specialties Division, Children and Adolescents Department, Geneva University Hospitals