The PURPLE N study: objective and perceived nutritional status in children and adolescents with cerebral palsy.

Autor:	Fogarasi A; Child Neurology Department, Bethesda Children's Hospital, Budapest, Hungary., Fazzi E; Unit of Child Neurology and Psychiatry, ASST Spedali Civili, Brescia, Italy.; Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Smorenburg ARP; Department of Specialized Nutrition, Danone Nutricia Research, Utrecht, The Netherlands., Mazurkiewicz-Beldzinska M; Department of Developmental Neurology, Medical University of Gdańsk, Gdańsk, Poland., Dinopoulos A; 3rd Department of Pediatrics, Attikon General Hospital, University of Athens, Athens, Greece., Pobiecka A; Department of Pediatrics, University Hospital Trnava, Slovakia., Schröder-van den Nieuwendijk D; Department of Dietetics, Roessingh Rehabilitation Centre, Enschede, The Netherlands., Kraus J; Department of Child Neurology, University Hospital Motol, Czech Republic., Tekgül H; Ege University School of Medicine, Pediatric Neurology, Izmir, Turkey., Kraus J; Department of Child Neurology, 2nd Faculty of Medicine, Charles University, University Hospital Motol, Prague, Czech Republic., Dinopoulos A; Pediatric Neurology Unit, 3rd Department of Pediatrics, University of Athens, Attikon General Hospital, Athens., Koutsaki M; Pediatric Neurology Unit, 3rd Department of Pediatrics, University of Athens, Attikon General Hospital, Athens., Fogarasi A; Bethesda Children's Hospital, Budapest., Baranello G; Fondazione IRCCS, Neurological Institute 'Carlo Besta' Milan., Bertoli S; International Center for the Assessment of Nutritional Status (ICANS), Department of Food Environmental and Nutritional Sciences (DeFENS), University of Milan., Caramaschi E; Department of Medical and Surgical Sciences of Mother, Children and Adults, Pediatric Unit, University of Modena and Reggio Emilia, Modena., Cordelli DM; Child Neurology and Psychiatry Unit, Department of Medical and Surgical Sciences (DIMEC), S. Orsola Hospital, University of Bologna., De Amicis R; International Center for the Assessment of Nutritional Status (ICANS), Department of Food Environmental and Nutritional Sciences (DeFENS), University of Milan., Fazzi E; ASST Spedali Civili, Brescia, and University of Brescia, Brescia, Italy., Forchielli ML; Pediatric Gastroenterology and Nutrition Clinic, AO Sant'Orsola - Malpighi, University of Bologna., Guerra A; Pediatric Unit, Department of Medical and Surgical Sciences for Mothers, Children and Adults, University of Modena and Reggio Emilia, Modena., Lividini A; Child Neurology and Psychiatry Unit, S. Orsola Hospital, University of Bologna., Marchiò M; Pediatric Unit, Department of Medical and Surgical Sciences for Mothers, Children and Adults, University of Modena and Reggio Emilia, Modena., Rossi A; Child and Adolescent Neurology and Psychiatry Unit, Children Hospital, ASST Spedali Civili - Brescia., Nieuwendijk DSD; Department of Dietetics, Roessingh Rehabilitation Centre, Enschede, The Netherlands., Fliciński J; Chair and Department of Developmental Neurology, Poznan University of Medical Sciences., Gurda B; Chair and Department of Developmental Neurology, Poznan University of Medical Sciences., Lemska A; Department of Developmental Neurology, Medical University of Gdańsk., Matheisel A; Department of Developmental Neurology, Medical University of Gdańsk., Mazurkiewicz-Beldzinska M; Department of Developmental Neurology, Medical University of Gdańsk., Niwinska Z; Chair and Department of Developmental Neurology, Poznan University of Medical Sciences., Pawłowicz M; Department of Developmental Neurology, Medical University of Gdańsk.; (current affiliations: Department of Pediatric Neurology.; Provincial Specialist Children's Hospital in Olsztyn, Olsztyn.; Department of Pathophysiology, Faculty of Medicine, Warmia and Mazury University in Olsztyn, Olsztyn, Poland)., Sawicka A; Department of Developmental Neurology, Medical University of Gdańsk., Steinborn B; Chair and Department of Developmental Neurology, Poznan University of Medical Sciences., Szmuda M; Department of Developmental Neurology, Medical University of Gdańsk., Winczewska-Wiktor A; Chair and Department of Developmental Neurology, Poznan University of Medical Sciences., Zawadzka M; Department of Developmental Neurology, Medical University of Gdańsk., Pobiecka A; Department of Pediatrics, University Hospital Trnava, Slovakia., Arhan E; Gazi University School of Medicine/Neurology, Gazi., Aydin K; Gazi University, School of Medicine, Pediatric Neurology, Ankara., Bayram E; Dokuz Eylul University School of Medicine, Pediatric Neurology, Izmir., Carman KB; Division of Pediatric Intensive Care Unit, Eskişehir Osmangazi University Medical Faculty., Edem P; Dokuz Eylul University School of Medicine, Pediatric Neurology, Izmir., Ertem D; Marmara University School of Medicine/Gastroenterology, Istanbul., Goktas ÖA; Ankara University School of Medicine/Neurology Ankara., Gungor S; Inonu University School of Medicine/Neurology, Malatya., Haliloglu G; Hacettepe University Faculty of Medicine, Department of Pediatric Neurology, Ankara., Kansu A; Ankara University School of Medicine/Gastroenterology, Ankara., Kömür M; Mersin University School of Medicine, Mersin., Mutlu A; Hacettepe University, Faculty of Physical Therapy and Rehabilitation/Developmental and Early Physiotherapy Unit, Ankara., Kırsaçlıoğlu CT; Ankara University School of Medicine/Gastroenterology, Ankara., Okuyaz Ç; Division of Pediatric Neurology, Faculty of Medicine, Mersin University, Mersin., Özgör B; Inonu University School of Medicine, Malatya., Ozturk Y; Dokuzeylul University School of Medicine/Gastroenterology, Izmir., Sager SG; Marmara University School of Medicine/Gastroenterology, Istanbul., Sarıgeçili E; Mersin University School of Medicine, Mersin., Selimoglu MA; Inonu University School of Medicine/Pediatric Gastroenterology, Malatya., Serin HMÖ; Ege University School of Medicine/Neurology, Izmir., Teber ST; University of Ankara Faculty of Medicine, Department of Child Neurology, Ankara., Tekgül H; Ege University School of Medicine, Pediatric Neurology, Izmir., Thomas G; Marmara University School of Medicine/Gastroenterology, Istanbul., Turkdogan D; Marmara University School of Medicine/Neurology Istanbul., Volkan B; Marmara University School of Medicine/Gastroenterology, Istanbul., Yarar C; Department of Pediatric Neurology, Eskişehir Osmangazi University School of Medicine, Eskişehir., Yilmaz SK; Ege University School of Medicine/Neurology, Izmir.
Jazyk:	angličtina
Zdroj:	Disability and rehabilitation [Disabil Rehabil] 2022 Nov; Vol. 44 (22), pp. 6668-6675. Date of Electronic Publication: 2021 Sep 02.
DOI:	10.1080/09638288.2021.1970255
Abstrakt:	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.
Databáze:	MEDLINE
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