Trajectoires de soins et facteurs sociodémographiques : l’exemple des maladies rares en France

Care path and sociodemographic attributes: the case of rare diseases in France
This article provides an illustration of the factors influencing the care path followed by patients, taking the example of patients with a rare disease. Thanks to an original database of 587 interviewed patients, it is possible to observe that the personal characteristics of patients influence the length and shape of the care trajectory. We analyze three variables particularly likely to attest to the quality of the care pathway for rare diseases : the length of the period before getting the diagnosis, the knowledge and the consultation of reference centers dedicated to these diseases. We show that the first variable is influenced by personal characteristics, such as age of the patient, by the choice of medical contacts made by the patient (number of contacts and structure contacted) and the attributes of his disease (severity and prevalence). The other two variables are essentially influenced by the regional dimension, that is to say, the residential area of the patient and the geographical distance that separates his home from the reference center. This is likely to hamper against the public health policy to implement organizational arrangements and to improve access to care, as centers of reference for rare diseases intend to do.