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The PURPLE N study: objective and perceived nutritional status in children and adolescents with cerebral palsy
A. Fogarasi, E. Fazzi, ARP. Smorenburg, M. Mazurkiewicz-Beldzinska, A. Dinopoulos, A. Pobiecka, D. Schröder-van den Nieuwendijk, J. Kraus, H. Tekgül, PURPLE N study group, Czech Republic:, J. Kraus, Greece:, A. Dinopoulos, M. Koutsaki, Hungary:,...
Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu časopisecké články, práce podpořená grantem
- MeSH
- dítě MeSH
- lidé MeSH
- mladiství MeSH
- mozková obrna * MeSH
- nutriční stav MeSH
- osoby pečující o pacienty MeSH
- podvýživa * diagnóza MeSH
- průzkumy a dotazníky MeSH
- Check Tag
- dítě MeSH
- lidé MeSH
- mladiství MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
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 S Orsola Hospital University of Bologna
Child Neurology Department Bethesda Children's Hospital Budapest Hungary
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 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
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
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
Citace poskytuje Crossref.org
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- $a Fogarasi, Andras $u Child Neurology Department, Bethesda Children's Hospital, Budapest, Hungary
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- $a The PURPLE N study: objective and perceived nutritional status in children and adolescents with cerebral palsy / $c A. Fogarasi, E. Fazzi, ARP. Smorenburg, M. Mazurkiewicz-Beldzinska, A. Dinopoulos, A. Pobiecka, D. Schröder-van den Nieuwendijk, J. Kraus, H. Tekgül, PURPLE N study group, Czech Republic:, J. Kraus, Greece:, A. Dinopoulos, M. Koutsaki, Hungary:, A. Fogarasi, Italy:, G. Baranello, S. Bertoli, E. Caramaschi, DM. Cordelli, R. De Amicis, E. Fazzi, ML. Forchielli, A. Guerra, A. Lividini, M. Marchiò, A. Rossi, Netherlands:, DSD. Nieuwendijk, Poland:, J. Fliciński, B. Gurda, A. Lemska, A. Matheisel, M. Mazurkiewicz-Beldzinska, Z. Niwinska, M. Pawłowicz, A. Sawicka, B. Steinborn, M. Szmuda, A. Winczewska-Wiktor, M. Zawadzka, Slovakia:, A. Pobiecka, Turkey:, E. Arhan, K. Aydin, E. Bayram, KB. Carman, P. Edem, D. Ertem, ÖA. Goktas, S. Gungor, G. Haliloglu, A. Kansu, M. Kömür, A. Mutlu, CT. Kırsaçlıoğlu, Ç. Okuyaz, B. Özgör, Y. Ozturk, SG. Sager, E. Sarıgeçili, MA. Selimoglu, HMÖ. Serin, ST. Teber, H. Tekgül, G. Thomas, D. Turkdogan, B. Volkan, C. Yarar, SK. Yilmaz
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- $a 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.
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