Cerebral Palsy (CP) Clinical Trial
Official title:
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.
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.
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