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

NCT ID: NCT04509544

Last Updated: 2020-08-12

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 1159 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2016-06-01
• Study Completion Date: 2017-06-30

Brief Summary

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.

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.

Conditions

Cerebral Palsy (CP)

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: CROSS_SECTIONAL

Eligibility Criteria

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)

• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Kappa Santé

INDUSTRY

Sponsor Role: collaborator

Envoludia

UNKNOWN

Sponsor Role: collaborator

FFAIMC

UNKNOWN

Sponsor Role: collaborator

CNSA

UNKNOWN

Sponsor Role: collaborator

KLESIA

UNKNOWN

Sponsor Role: collaborator

Fondation L'Oréal

UNKNOWN

Sponsor Role: collaborator

SESEP

UNKNOWN

Sponsor Role: collaborator

Fondation Paralysie Cérébrale

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Javier De La Cruz, MD

Role: STUDY_CHAIR

Health Research Institute Imas12, Madrid, Spain

Maria BODORIA, MD

Role: STUDY_DIRECTOR

Fondation Paralysie Cérébrale

References

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.

Reference Type: RESULT

PMID: 10245370 (View on PubMed)

Related Links

https://doi.org/10.1016/j.motcer.2018.03.002

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.

https://doi.org/10.1016/j.rehab.2019.09.002

Determinants of satisfaction with motor rehabilitation in people with cerebral palsy: A national survey in France (ESPaCe)

Other Identifiers

ESPaCe

Identifier Type: -

Identifier Source: org_study_id