Cerebral Palsy
Conditions
Keywords
Cerebral Palsy
Brief summary
HCPs will complete questionnaires about their patients with Cerebral Palsy (CP) and invite parents/caregivers of these patients to fill in questionnaires as well. Questionnaires include questions on individualized treatment, nutritional profile and management, and patient characteristics.
Detailed description
Coordinating health care professionals (HCPs; e.g. paediatric neurologists, physiotherapists) in different centres across different countries will be asked to participate in this cross-sectional study. A) for the HCP to fill out a questionnaire about their CP child, related to general subject characteristics, motor function, co-morbidities, type of therapies, anthropometry, feeding mode and nutritional status; and B) for parents (/legal representatives) to receive and fill out questionnaires about their CP child and themselves, related to general subject characteristics, motor function, co-morbidities, type of therapies, anthropometry, feeding mode and nutritional status, participation and (their own) quality of life. If parents (/legal representatives) agree to A), but not B) then a subject will still enter the study, but without the parental assessment.
Interventions
None listed
Sponsors
Nutricia Research
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
1 Months to 17 Years
Healthy volunteers
No
Inclusion criteria
1. Confirmed diagnosis of Cerebral Palsy 2. Age\<18 years 3. Have visited the HCP within the last year 4. Written informed consent provided by parents/legal representatives according to local law
Exclusion criteria
1. Neurodegenerative diseases 2. Acute infections: meningitis, encephalitis or poliomyelitis
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Quantify current CP characteristics 1 (general subject characteristics): | Data collected retrospectively, from within 12 months of entering the questionnaire | Using questionnaires to quantify current CP characteristics with respect to: \- General subject characteristics (e.g. Sex, Birth weight \[g\], Type of CP motor disorder \[category\] |
| Quantify current CP characteristics 2 (anthropometry): | Data collected retrospectively, from within 12 months of entering the questionnaire | Using questionnaires to quantify current CP characteristics with respect to: Anthropometry: length \[cm\]; weight \[grams\] and BMI (kg/m2) |
| Quantify current CP characteristics 3 (motor function) | Data collected retrospectively, from within 12 months of entering the questionnaire | Using questionnaires to quantify current CP characteristics with respect to: Motor function (GMFCS \[category\]; GMFM measurement type \[GMFM-86/GMFM-88\] |
| Quantify current CP characteristics 4 (comorbidities) | Data collected retrospectively, from within 12 months of entering the questionnaire | Using questionnaires to quantify current CP characteristics with respect to: Comorbidities: epilepsy, cognitive function, GI problems \[categories\] |
| Quantify current CP characteristics 5 (therapies) | Data collected retrospectively, from within 12 months of entering the questionnaire | Using questionnaires to quantify current CP characteristics with respect to: Type and frequency of physical/occupational therapy \[type, number of hours per day /days per week\] |
| Quantify current CP characteristics 6 (feeding mode) | Data collected retrospectively, from within 12 months of entering the questionnaire | Using questionnaires to quantify current CP characteristics with respect to: Feeding mode and/or problems (tube feeding \[yes/no\], type of tube feeding etc) |
| Quantify current CP characteristics 7 (nutritional status) | Data collected retrospectively, from within 12 months of entering the questionnaire | Using questionnaires to quantify current CP characteristics with respect to: Nutritional status (HCP and parent perspective on nutritional status, concerns \[yes/no\]) |
Other
| Measure | Time frame | Description |
|---|---|---|
| Quality of life and participation 1 | Data collected retrospectively, from within 12 months of entering the questionnaire | Questionnaire to assess Quality of Life of subjects with CP \[scores on domains\] |
| Quality of life and participation 2 | Data collected retrospectively, from within 12 months of entering the questionnaire | Questionnaire to assess Quality of Life of parents (/legal representatives) of subjects with CP \[scores on domains\] |
| Quality of life and participation 3 | Data collected retrospectively, from within 12 months of entering the questionnaire | Level of participation included in the general parent questionnaire \[categories\] |
Countries
Czechia, Greece, Hungary, Italy, Netherlands, Poland, Slovakia, Turkey (Türkiye)
Outcome results
None listed