Optimisation des parcours patients pour lutter contre l'errance de diagnostic des patients atteints de maladies rares
This addresses the issue of medical wandering for rare disease patients and healthcare systems, though it appears incremental as it builds on existing networks with a new alert approach.
The paper tackled the problem of diagnostic delays for rare disease patients in France, where patients wait an average of two years, by developing a probabilistic model and simulator to create an alert system that detects wandering patients and refers them to specialized centers, considering potential additional costs.
A patient suffering from a rare disease in France has to wait an average of two years before being diagnosed. This medical wandering is highly detrimental both for the health system and for patients whose pathology may worsen. There exists an efficient network of Centres of Reference for Rare Diseases (CRMR), but patients are often referred to these structures too late. We are considering a probabilistic modelling of the patient pathway in order to create a simulator that will allow us to create an alert system that detects wandering patients and refers them to a CRMR while considering the potential additional costs associated with these decisions.