The PURPLE N study: objective and perceived nutritional status in children and adolescents with cerebral palsy
Creators: name: Fogarasi, Andras
name: Fazzi, Elisa
name: Smorenburg, Ana R. P.
name: Mazurkiewicz-Beldzinska, Maria
name: Dinopoulos, Argirios
name: Pobiecka, Alena
name: Nieuwendijk, Dea Schröder-van den
name: Kraus, Josef
name: Tekgül, Hasan
Publisher: name: Taylor & Francis
Year: 2021
Subjects: subject: Medicine
subject: Neuroscience
subject: Biotechnology
subject: 59999 Environmental Sciences not elsewhere classified
subject: FOS: Earth and related environmental sciences
subject: Sociology
subject: FOS: Sociology
subject: 69999 Biological Sciences not elsewhere classified
subject: FOS: Biological sciences
subject: Statistics
subject: FOS: Mathematics
subject: Science Policy
subject: 111714 Mental Health
subject: FOS: Health sciences

description: 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. 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. 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. 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. <b>Clinical trial registration:</b> 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. Use 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.