ESPaCe : A national survey on requirements, expectations and prioritization in motor rehabilitation reported by people with cerebral palsy and their families.

This program was coordinated within the Fondation Paralysie Cerebrale by Dr. Maria Bodoria and Ms. Geneviève Geyer.

Inspired by families, built with them and based on their return of experience, this survey was developed with the help of a multidisciplinary steering committee. It includes:

Kappa Santé, a Contract Research Organisation, specialised in epidemiological studies in France, was selected in September 2015 to accompany the foundation in the implementation of this project.

The main objective of the ESPaCe survey was to evaluate the care received, the perceived needs, the priorities and the expected improvements for motor rehabilitation by people with CP and their families.

Specific objectives were to:

• Describe the current state of the real practices regarding motor rehabilitation (qualitative and quantitative) of people with cerebral palsy
• Assess the met and unmet needs perceived by people with cerebral palsy and their families regarding motor rehabilitation and identify the reasons for these unmet needs
•  Identify family priorities regarding the improvement of the care of people with cerebral palsy in terms of motor rehabilitation
•  Evaluate the care received, perceived needs and priorities and improvements expected according to the characteristics of people with cerebral palsy (age, type of CP, functioning, etc.) and organization of care (geography, structure, etc.).

This is a national, cross-sectional survey administered to people with PC and their families. The questionnaire was prepared on the basis of feedback from people with CP and their families, and was developed with the help of the steering Committee.

Each person with CP could participate in the survey by completing a questionnaire via a secure online site on the Internet or a paper version questionnaire. The questionnaire included a common core and a specific part according to the age class of the person with CP (child 2-6 years, child 7-11 years, teenager 12-17 years old, adult 18 years and older).

The collection of the survey data via the Internet and via paper questionnaires took place from 1 June 2016 until the end of June 2017.

Throughout the duration of the data collection, the methods of dissemination of the survey took into account the multiplicity of care of the persons concerned and their families in order to access to the target population as a whole.

The main results of this survey are:

• A total of 1159 people participated in the survey of which 997 had a confirmed CP, were older than 2 years and answered the questions about motor rehabilitation, thus constituting the main population of the survey. Half of the participants (51%) were adults (n=511). The other half was made up of children under 12 years of age (n =341, 34%) and adolescents (n=145, 15%). From a functional point of view (GMFCS), 50% of the participants were categorised as ' walking ' (GMFCS I, II, III) and 45 % as ' non-walking ' (GMFCS IV, V); the data were not available for 5% of participants.
• The survey participants mainly followed motor rehabilitation sessions at the time of the survey (91%). Almost half of the participants were followed by a liberal physiotherapist (47%). The time devoted to physiotherapy per week was in average of 2.1 hours including 2 sessions from 30 to 45 minutes per week. While a large majority of participants currently had motor rehabilitation sessions, not all of them have had continuous physiotherapy sessions since the beginning. Stops are to be noted for 24% of children aged 2 to 6 years currently receiving motor rehabilitation, 31% of children aged 7-11, 15% of adolescents, 40% of adults. The stops are mainly associated with the absence of physiotherapists/structures adapted to the needs (at any age), breaks during vacations or associated fatigue for children, the urge to take a break or schedules too busy for teenagers and the difficulty of combining sessions and professional activities for adults.
• In addition to physiotherapy, participants underwent complementary reeducations (occupational therapy, psychomotricity, speech therapy). Almost half of adults do not follow any of these complementary reeducations, but only 7% of the children. A proportion of 62% of participants followed at least one other physical activity, including adapted physical activities (21%), balneotherapy (19%) or equitherapy (10%). They appeared to be more common in children between the ages of 7 and 11 and in adolescents.
• Coordination of motor rehabilitation by a professional was present for 56% of participants, slightly more in children 7-11 years of age and in adolescents (65% and 60%), and slightly more in non-walking participants (62% vs 51%).
• Cerebral palsy was associated with painful episodes rated from 2 to 5 in 5 in 66% of cases, 54% in children aged 2 to 6 years up to 75% in adults. According to the participant, physical therapy had an influence on pain, moderate (rating 2 or 3/5) in 31% of cases and significant (rating 4/5) in 30%. Passive techniques were the most associated with severe pain (41%) regardless of the age and the motor status of the patient.
• The first difficulties reported by the participants were to find a physiotherapist trained to cerebral palsy (53%, with major difficulties) and to find a physiotherapist available to carry out the sessions (41%, with major difficulties).  These two difficulties were reported as highly important by the non walking participants. The other difficulties frequently expressed are related to the organisation of the sessions including the integration of the sessions in the planning, (especially for children/adolescents 36%), the management of the fatigue generated by the sessions (especially for children/adolescents 34%) and the management of the transport to the sessions (especially for children/adolescents 34%). They are more expressed by the participants able to walk.
• Satisfaction was assessed using a standardized scale, CSQ-8. This score was significantly higher (best satisfaction) in children than in adolescents and adults (25.1 vs. 24 and 23). The satisfaction score was lower for non-walking persons (22.3 vs 25.3). Identified independent determinants of satisfaction with motor rehabilitation were:  (i) person with CP characteristics (GMFCS, MACS, pain) (ii) organisation of motor rehabilitation (coordination of health care, CP training of health professionals), (iii) content of physiotherapy sessions (management of pain by the physiotherapist, information and goal-setting).

This survey is an innovative project (1^st survey on this issue from the point of view of users in France), which is based on a multidisciplinary committee.

The results of this survey will be one of the elements to be considered in the development of good practice recommendations regarding motor rehabilitation that could be conducted in connection with the high authority of health. These results will also be able to bring out research projects meeting the expectations of the people with CP and their families.

The results of this survey could therefore contribute to the improvement of motor rehabilitation of people with PC, an estimated population of about 125,000 people in France.

Novack et al. A systematic review of interventions for children with cerebral palsy: state of the evidence Dev Med Child Neurol  2013 ; 55(10) : 885-910. See the paper

Brandão MB, Oliveira RH, Mancini MC. Functional priorities reported by parents of children with cerebral palsy: contribution to the pediatric rehabilitation process, Braz J Phys Ther. 2014; 18(6): 563-71. See the paper

Origin, foundations, rationale, governance of ESPaCe: A national survey on unmet needs and expectations’ prioritization about motor rehabilitation reported by people with cerebral palsy and their family. See the paper

Key words : Cerebral palsy, motor rehabilitation, physiotherapy, unmet needs, satisfaction, expectations’ prioritization