DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE Parent-reported indicators for detecting feeding and swallowing difficulties and undernutrition in preschool-aged children with cerebral palsy KATHERINE A BENFER 1 | KELLY A WEIR 2,3 | ROBERT S WARE 2,4 | PETER S W DAVIES 5 | JOAN ARVEDSON 6 | ROSLYN N BOYD 1 | KRISTIE L BELL 1,5,7 1 Queensland Cerebral Palsy and Rehabilitation Research Centre, Child Health Research Centre, The University of Queensland, Brisbane, Qld; 2 Menzies Health Institute Queensland, Griffith University, Gold Coast, Qld; 3 Gold Coast University Hospital, Gold Coast Health, Southport, Qld; 4 Queensland Centre for Intellectual and Developmental Disability, The University of Queensland, Brisbane, Qld; 5 Children’s Nutrition Research Centre, Child Health Research Centre, The University of Queensland, Brisbane, Qld, Australia. 6 Children’s Hospital of Wisconsin-Milwaukee, Medical College of Wisconsin-Milwaukee, Milwaukee, WI, USA. 7 Lady Cilento Children’s Hospital, Children’s Health Queensland, Brisbane, Qld, Australia. Correspondence to Katherine Benfer, Queensland Cerebral Palsy and Rehabilitation Research Centre, Child Health Research Centre, The University of Queensland, Level 6, Centre for Children’s Health Research, 62 Graham Street, South Brisbane, Qld 4101, Australia. E-mail: katherine.benfer@uqconnect.edu.au This article is commented on by Sheppard on page 1109 of this issue. PUBLICATION DATA Accepted for publication 26th April 2017. Published online 6th September 2017. ABBREVIATIONS DDS Dysphagia Disorders Survey— Pediatric EDACS Eating and Drinking Ability Classification System AIM To determine the most accurate parent-reported indicators for detecting (1) feeding/ swallowing difficulties and (2) undernutrition in preschool-aged children with cerebral palsy (CP). METHOD This was a longitudinal, population-based study, involving 179 children with CP, aged 18 to 60 months (mean 34.1mo [SD 11.9] at entry, 111 males, 68 females [Gross Motor Function Classification System level I, 84; II, 23; III, 28; IV, 18; V, 26], 423 data points). Feeding/swallowing difficulties were determined by the Dysphagia Disorders Survey and 16 signs suggestive of pharyngeal phase impairment. Undernutrition was indicated by height–weight and skinfold composite z-scores less than À2. Primary parent-reported indicators included mealtime duration, mealtime stress, concern about growth, and respiratory problems. Other indicators were derived from a parent feeding questionnaire, including ‘significant difficulty eating and drinking’. Data were analysed using multilevel mixed-effects regression and diagnostic statistics. RESULTS Primary parent-reported indicators associated with feeding/swallowing were ‘moderate–severe parent stress’ (odds ratio [OR]=3.2 [95% confidence interval {CI} 1.3–7.8]; p<0.01), ‘moderate–severe concern regarding growth’ (OR=4.5 [95% CI 1.7–11.9]; p<0.01), and ‘any respiratory condition’ (OR=1.8 [95% CI 1.4–5.8]; p<0.01). The indicator associated with undernutrition was ‘moderate–severe concern regarding growth’ (height–weight OR=13.5 [95% CI 3.0–61.3]; p<0.01; skinfold OR=19.1 [95% CI 3.7–98.9]; p<0.01). ‘Significant difficulty eating and drinking’ was most sensitive/specific for feeding outcome (sensitivity=58.6%, specificity=100.0%), and ‘parent concern regarding growth’ for undernutrition (sensitivity=77.8%, specificity=77.0%). INTERPRETATION Parent-reported indicators are feasible for detecting feeding and swallowing difficulties and undernutrition in children with CP, but need formal validation. There is growing awareness of the significance of undernu- trition as a foundational health concern for children with cerebral palsy (CP). 1,2 It has been well documented that feeding and swallowing difficulties, and consequent limita- tions to dietary intake, are important underlying factors contributing to undernutrition in this population. 3 Diffi- culties with feeding and swallowing can also result in pro- longed and stressful mealtimes, and reduce the safety of the swallow. Feeding and swallowing difficulties persist in approximately two-thirds of preschool-aged children with CP 4 and, as such, form part of their expected clinical profile. To facilitate earlier management of feeding and swallowing difficulties and undernutrition, it is important to develop efficient and effective screening tools for use in children with CP. Parent-report has frequently been used as a measure of feeding and swallowing difficulties in children with CP. 3,5–7 Studies using parent-report to identify feeding and swallowing difficulties in CP have used structured or semi- structured item protocols that were developed for the study alone. Only three of seven questionnaires documented a formal development phase (including literature review, © 2017 Mac Keith Press DOI: 10.1111/dmcn.13498 1181