Origine, fondements rationnels et gouvernance de ESPaCe (Enquête Satisfaction Paralysie Cérébrale) : enquête nationale sur les besoins perçus et priorités d'amélioration en rééducation motrice rapportés par les personnes atteintes de paralysie cérébral

Individuals with cerebral palsy have permanent disorders of movement and posture, due to an abnormality or lesion in the developing brain, which result in activity limitation. In addition to motor disorders, persons with cerebral palsy often have other associated disorders, leading to further restrictions in participation. The current approach to the management of children and adults with cerebral palsy predominantly involves physical habilitation and rehabilitation aimed at optimising motor function and improving autonomy. However, advocacy groups have reported difficulties with access to physiotherapy services that provide quality care. In France, there are currently no practice guidelines based on best-available evidence regarding rehabilitation. In order to ensure the delivery of high quality care, evidence for treatment and practices, as well as the values and preferences of those involved, must be considered. The views of people with cerebral palsy and of their family regarding physical rehabilitation are poorly documented in the literature and very few French data are available. The “Fondation paralysie cérébrale” set up the ESPaCe project to investigate values and preferences of people with cerebral palsy and their families regarding rehabilitation services. The purpose of ESPaCe project was to contribute to developing practice guidelines and to promote quality care for persons with cerebral palsy in France. This paper describes the background, rationale and organisation of ESPaCe, which associated in the development, running and reporting of the study, persons with cerebral palsy, representative of families, health care providers, and scientific and professional societies.