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