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

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.
Danone Nutricia Research, Utrecht, the Netherlands; Nutricia Advanced Medical Nutrition in Czech Republic; Nutricia Advanced Medical Nutrition in Greece; Nutricia Advanced Medical Nutrition in Hungary; Nutricia Advanced Medical Nutrition in Italy; Nutricia Advanced Medical Nutrition in Poland; Nutricia Advanced Medical Nutrition in Slovakia; Nutricia Advanced Medical Nutrition in The Netherlands; Nutricia Advanced Medical Nutrition in Turkey; Danone Nutricia Research
This study was sponsored by Danone Nutricia Research, Utrecht, the Netherlands. Local financial support was provided by the local business units of Nutricia Advanced Medical Nutrition in Czech Republic, Greece, Hungary, Italy, Poland, Slovakia, The Netherlands, and Turkey. Medical writing support was provided by Tim Kelly, Medi-Kelsey Limited, funded by Danone Nutricia Research.