Unmet needs and expectations about motor rehabilitation reported by children, youth and adults with cerebral palsy and their families: A national survey in France, 2016–2017

Abstract

Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, attributed to non-progressive disturbances that occurred in the development of fetal or infant brain. Motor rehabilitation (MR) constitutes a base to the management of people with CP. In the absence of French reference guidelines, advocacy groups have reported difficulties with access to convenient and quality physiotherapy services. The aim of this study was to identify perceived unmet needs and expectations about motor habilitation/rehabilitation of children, adolescents and adults with cerebral palsy. A collaborative survey was designed and led by advocacy groups with the support of scientific societies in France. Persons with cerebral palsy or their families, reached through local and national associations and professional networks, compiled a web-based or mail-in questionnaire (June/2016–June/2017) and 1010 responses were collated on 354 children, 145 adolescents and 511 adults, (46% females). Fifty-two were ambulant (GMFCS I-III) and 91% had physiotherapy at time of completing the questionnaire. The most highly perceived unmet needs were to improve communication between professionals for appropriate follow-up (79%), to feel free to ask questions (78%), and to be involved in the decision-making process regarding therapies (61%). The most important reported difficulties were to find a physiotherapist trained in CP (51%) or available (39%), and to integrate physiotherapy sessions in the personal/family schedule (34%). The most frequent expectations were about physiotherapist training (79%), information on health care and recommended exercises (75%), and access to rehabilitation centres/physiotherapists (70%); 50% reported high to very high expectations regarding motor rehabilitation methods different from those currently received. Persons with cerebral palsy and their families identified unmet needs and expectations regarding motor rehabilitation that should be taken-up by practitioners, health care managers and policy makers, and practice guidelines developers.