The PURPLE N study: objective and perceived nutritional status in children and adolescents with cerebral palsy
András Fogarasi, András Fogarasi, Elisa Fazzi, Ana R.P. Smorenburg, Maria Mazurkiewicz-Beldzinska, Argirios Dinopoulos, Alena Pobiecka, Dea Schröder-van den Nieuwendijk, Josef Kraus, Hasan Tekgül, on behalf of the PURPLE N study group, Czech Republic:, Josef Kraus, Greece:, Argirios Dinopoulos, Maria Koutsaki, Hungary:, András Fogarasi, András Fogarasi, Italy:, Giovanni Baranello, Simona Bertoli, Elisa Caramaschi, Duccio Maria Cordelli, Ramona De Amicis, Elisa Fazzi, Maria Luisa Forchielli, Azzurra Guerra, Althea Lividini, Maddalena Marchiò, Andrea Rossi, The Netherlands:, Dea Schröder-van den Nieuwendijk, Poland:, Jędrzej Fliciński, Barbara Gurda, Anna Lemska, Agnieszka Matheisel, Maria Mazurkiewicz-Beldzinska, Zuzanna Niwinska, Małgorzata Pawłowicz, Agnieszka Sawicka, Barbara Steinborn, Marta Szmuda, Anna Winczewska‐Wiktor, Marta Zawadzka, Slovakia:, Alena Pobiecka, Turkey:, Ebru Arhan, Kürşad Aydın, Erhan Bayram, Kürşat Bora Çarman, Pınar Edem, Deniz Ertem, Özben Akıncı Göktaş, Serdal Güngör, Göknur Haliloğlu, Aydan Kansu, Mustafa Kömür, Akmer Mutlu, Ceyda Tuna Kırşaçlıoğlu, Çetin Okuyaz, Bilge Özgör, Yeşim Öztürk, Safiye Güneş Sağer, Esra Sarıgeçili, Mukadder Ayşe Selimoğlu, Hepsen Mine Serin, Serap Teber, Hasan Tekgül, G. Thomas, Dilşad Türkdoğan, Burcu Volkan, Çoşkun Yarar, Sanem Yılmaz
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. 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.