PURPOSE: To obtain information on characteristics, management, current objective nutritional status and perception of nutritional status of children with cerebral palsy (CP) from healthcare professionals (HCPs) and caregivers. MATERIALS AND METHODS: A detailed survey of several items on eight main topics (general characteristics, motor function, comorbidities, therapies, anthropometry, feeding mode and problems and perceived nutritional status) was developed and tested for the study. Correlation between nutritional status and Gross Motor Function Classification System (GMFCS) levels was assessed using continuous variables (Z-scores for weight-for-age, height-for-age, weight-for-height, and body mass index-for-age), and categorical variables (being malnourished, stunted, or wasted). HCP and caregiver perceptions of the child's nutritional status as well as agreement between perceived and objective nutritional status and agreement between perceived nutritional status and concerns about the nutritional status were analyzed. RESULTS: Data were available for 497 participants from eight European countries. Poorer nutritional status was associated with higher (more severe) GMFCS levels. There was minimal agreement between perceived and objective nutritional status, both for HCPs and caregivers. Agreement between HCP and caregiver perceptions of the child's nutritional status was weak (weighted kappa 0.56). However, the concerns about the nutritional status of the child were in line with the perceived nutritional status. CONCLUSIONS: The risk of poor nutritional status is associated with more severe disability in children and adolescents with CP. There is a mismatch between HCP and caregiver perceptions of participants' nutritional status as well as between subjective and objective nutritional status. Our data warrant the use of a simple and objective screening tool in daily practice to determine nutritional status in children and adolescents with CP. Clinical trial registration: ClinicalTrials.gov Identifier: NCT03499288 (https://clinicaltrials.gov/ct2/show/NCT03499288). IMPLICATIONS FOR REHABILITATIONUse of the ESPGHAN recommendations and simple screening tools in daily practice is needed to improve nutritional care for individuals with CP.Attention should be paid to the differences in the perception of nutritional status of individuals with CP between professionals and caregivers to improve appropriate referral for nutritional support.Objective measures rather than the professional's perception need to be used to define the nutritional status of individuals with CP.

(current affiliations Department of Pediatric Neurology

3rd Department of Pediatrics Attikon General Hospital University of Athens Athens Greece

Ankara University School of Medicine Gastroenterology Ankara

Ankara University School of Medicine Neurology Ankara

ASST Spedali Civili Brescia and University of Brescia Brescia Italy

Bethesda Children's Hospital Budapest

Chair and Department of Developmental Neurology Poznan University of Medical Sciences

Child and Adolescent Neurology and Psychiatry Unit Children Hospital ASST Spedali Civili Brescia

Child Neurology and Psychiatry Unit Department of Medical and Surgical Sciences S Orsola Hospital University of Bologna

Child Neurology and Psychiatry Unit S Orsola Hospital University of Bologna

Child Neurology Department Bethesda Children's Hospital Budapest Hungary

Department of Child Neurology 2nd Faculty of Medicine Charles University University Hospital Motol Prague Czech Republic

Department of Child Neurology University Hospital Motol Czech Republic

Department of Clinical and Experimental Sciences University of Brescia Brescia Italy

Department of Developmental Neurology Medical University of Gdańsk

Department of Developmental Neurology Medical University of Gdańsk Gdańsk Poland

Department of Dietetics Roessingh Rehabilitation Centre Enschede The Netherlands

Department of Medical and Surgical Sciences of Mother Children and Adults Pediatric Unit University of Modena and Reggio Emilia Modena

Department of Pathophysiology Faculty of Medicine Warmia and Mazury University in Olsztyn Olsztyn Poland)

Department of Pediatric Neurology Eskişehir Osmangazi University School of Medicine Eskişehir

Department of Pediatrics University Hospital Trnava Slovakia

Department of Specialized Nutrition Danone Nutricia Research Utrecht The Netherlands

Division of Pediatric Intensive Care Unit Eskişehir Osmangazi University Medical Faculty

Division of Pediatric Neurology Faculty of Medicine Mersin University Mersin

Dokuz Eylul University School of Medicine Pediatric Neurology Izmir

Dokuzeylul University School of Medicine Gastroenterology Izmir

Ege University School of Medicine Neurology Izmir

Ege University School of Medicine Pediatric Neurology Izmir

Ege University School of Medicine Pediatric Neurology Izmir Turkey

Fondazione IRCCS Neurological Institute Carlo Besta Milan

Gazi University School of Medicine Neurology Gazi

Gazi University School of Medicine Pediatric Neurology Ankara

Hacettepe University Faculty of Medicine Department of Pediatric Neurology Ankara

Hacettepe University Faculty of Physical Therapy and Rehabilitation Developmental and Early Physiotherapy Unit Ankara

Inonu University School of Medicine Malatya

Inonu University School of Medicine Neurology Malatya

Inonu University School of Medicine Pediatric Gastroenterology Malatya

International Center for the Assessment of Nutritional Status University of Milan

Marmara University School of Medicine Gastroenterology Istanbul

Marmara University School of Medicine Neurology Istanbul

Mersin University School of Medicine Mersin

Pediatric Gastroenterology and Nutrition Clinic AO Sant'Orsola Malpighi University of Bologna

Pediatric Neurology Unit 3rd Department of Pediatrics University of Athens Attikon General Hospital Athens

Pediatric Unit Department of Medical and Surgical Sciences for Mothers Children and Adults University of Modena and Reggio Emilia Modena

Provincial Specialist Children's Hospital in Olsztyn Olsztyn

Unit of Child Neurology and Psychiatry ASST Spedali Civili Brescia Italy

University of Ankara Faculty of Medicine Department of Child Neurology Ankara

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ClinicalTrials.gov
NCT03499288