Satisfaction and Preferences About Motor Rehabilitation in People With Cerebral Palsy: ESPaCe, a French Survey (ESPaCe)

Patient's Preferences and Satisfaction About Physical Therapy Reported by Individuals With Cerebral Palsy and Families: ESPaCe, a National Survey in France.

This national cross-sectional ESPaCe survey (Enquête Satisfaction Paralysie Cérébrale) was conducted to evaluate perceived needs, barriers and expectations regarding Motor Rehabilitation services further to a preliminary qualitative work.

From June 2016 to June 2017, participants answered a web-based or postal questionnaire, by themselves or with the help of a family member.

Study Overview

• Status: Completed
• Conditions: Cerebral Palsy (CP)

Detailed Description

ESPaCe was a cross-sectional national survey designed to collect data on Cerebral Palsy (CP) motor rehabilitation from individuals with CP and their families in France.

Needs, barriers and expectations regarding PT services were identified in a series of standardised individual interviews and group discussions developed by a multidisciplinary group composed of individuals with cerebral palsy, families, professional organisation representatives, therapists and rehabilitation specialists, described as "ESPaCe working group". The issues identified in the preparatory qualitative work were structured in a questionnaire and tested in a feasibility study.This study was carried out in accordance with the Code of Ethics of the World Medical Association (Declaration of Helsinki). Informed consent was not required for this survey according to current French legislation.The study included all individuals with cerebral palsy aged 2 y.o. or more, whether they were receiving physiotherapy (PT) services at the time of the survey or not. CP features were self-reported. Eligibility was confirmed by cross-checking the responses to questionnaire items related to history, diagnosis and clinical description of CP. The questionnaire was completed either by individuals with cerebral palsy, a family member or a caretaker.

Participants were described with the following characteristics: age, gender, Gross Motor Function Classification System (GMFCS) level, CP subtype, associated impairments, frequency of pain, mother education (as a proxy for socio-economic status), and PT service provider.

Participation in the ESPaCe survey was promoted through local and national patient advocacy groups and professional networks. The questionnaire was completed online or mailed-in. Data collection was open from June 2016 to June 2017.Participation in the ESPaCe survey was promoted through local and national patient advocacy groups and professional networks.

• Study Type: Observational
• Enrollment (Actual): 1159

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Individuals living in France with a motor impairment consistent with the definition of Cerebral Palsy

Description

Inclusion Criteria:

• Anyone living in France with a motor impairment consistent with the definition of Cerebral Palsy (whether undergoing or not motor rehabilitation sessions)

Exclusion Criteria:

• Individuals who were not diagnosed with CP or when descriptive information provided in the survey regarding motor impairment was insufficiently detailed or did not meet the definition of CP (e.g., progressive disorders).
• Individuals for whom a questionnaire was already completed by a family member or caregiver

Of note main analyses will be run for participants > 2 years old (data for participants < 2 y o considered as exploratory data)

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Determinants of satisfaction with motor rehabilitation in people with cerebral palsy	Validated French version of Client Satisfaction Questionnaire (CSQ-8)The CSQ-8 includes 8 items, each rated on a 4-point Likert scale, ranging from 1 to 4. The CSQ-8 total score ranges from 8 to 32. A higher score represents greater satisfaction.	Day 1
Perceived needs, barrier to access and key expectations for physiotherapy services and associated motives	Likert scale ranging from 0 (never/not at all) to 5 (always/very high); Higher scores mean a worse outcome	Day 1
Physiotherapy practices	Weekly frequency and duration (min) of physiotherapy sessions	Day 1

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Analysis of the content of the free-text responses (ancillary study of ESPaCe)	Participants' comments were coded and compiled into themes using a text-mining approach allowing to provide context to supplement the results from the closed questions as well as identify any issues or opinions that were not covered by the closed questions.	Day 1

Collaborators and Investigators

• Sponsor: Fondation Paralysie Cérébrale
• Collaborators: Kappa Santé; Envoludia; FFAIMC; CNSA; KLESIA; Fondation L'Oréal; SESEP
• Investigators: Study Chair: Javier De La Cruz, MD, Health Research Institute Imas12, Madrid, Spain; Study Director: Maria BODORIA, MD, Fondation Paralysie Cérébrale

Publications and helpful links

General Publications

• Larsen DL, Attkisson CC, Hargreaves WA, Nguyen TD. Assessment of client/patient satisfaction: development of a general scale. Eval Program Plann. 1979;2(3):197-207. doi: 10.1016/0149-7189(79)90094-6. No abstract available.

Helpful Links

• rigin, 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. Motricité cérébrale 2018;39(2):44-52.
• Determinants of satisfaction with motor rehabilitation in people with cerebral palsy: A national survey in France (ESPaCe)

Study record dates

Study Major Dates

• Study Start (Actual): June 1, 2016
• Primary Completion (Actual): June 30, 2017
• Study Completion (Actual): June 30, 2017

Study Registration Dates

• First Submitted: July 7, 2020
• First Submitted That Met QC Criteria: August 9, 2020
• First Posted (Actual): August 12, 2020

Study Record Updates

• Last Update Posted (Actual): August 12, 2020
• Last Update Submitted That Met QC Criteria: August 9, 2020
• Last Verified: July 1, 2020

More Information

Terms related to this study

• Keywords: Satisfaction; Physiotherapy; Unmet needs; Motor Rehabilitation
• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Brain Damage, Chronic; Cerebral Palsy
• Other Study ID Numbers: ESPACE

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO
• IPD Plan Description: Satisfaction, perceived unmet needs, barriers and expectations about motor rehabilitation of children, adolescents and adults with cerebral palsy to be provided as a function of age and GMFCS

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No