Résumé
Sickle cell disease is the first genetic disease in France and is still unknown to the general public and health workers. However, it is essential to understand its complexity and its psycho-socio-educational impact. Objective: to explore the perception of sickle cell patients on their care path. Methods: qualitative study by semi-structured interviews with sickle cell patients (or parents of sick children), aged over 18 years, according to a theoretical sampling. The thematic analysis was accompanied by a triangulation of the data and stop the collection at saturation of the data. Results: eleven interviews were conducted, data saturation was obtained from the seventh. They involved 6 adults with sickle cell disease and 5 parents of sick children. Their definition of the disease focuses on its negative impact on daily life. There is an asymmetry in the levels of care in their health care system: voluntary exclusion of primary care professionals, insufficient psycho-social support, reluctance to go to the emergency room and hospital-centred follow-up. These conclusions are the result of two main issues: the ignorance of health professionals and their lack of interest in pathology; a lack of access and structuring of the care pathway. Conclusions: the current care path for sickle cell patients makes it possible to question the place of primary care in the journey of sickle cell patients and how to improve and enhance city-hospital coordination.