Global State of the Art and Science of Childhood Dysphagia: Similarities and Disparities in Burden.

Feeding/swallowing and airway protection are complex functions, essential for survival, and continue to evolve throughout the lifetime. Medical and surgical advances across the globe have improved the long-term survival of medically complex children at the cost of increasing comorbidities, including dysfunctional swallowing (dysphagia). Dysphagia is prominent in children with histories of preterm birth, neurologic and neuromuscular diagnoses, developmental delays, and aerodigestive disorders; and is associated with medical, health, and neurodevelopmental problems; and long-term socioeconomic, caregiver, health system, and social burdens. Despite these survival and population trends, data on global prevalence of childhood dysphagia and associated burdens are limited, and practice variations are common. This article reviews current global population and resource-dependent influences on current trends for children with dysphagia, disparities in the availability and access to specialized multidisciplinary care, and potential impacts on burdens. A patient example will illustrate some questions to be considered and decision-making options in relation to age and development, availability and accessibility to resources, as well as diverse cultures and family values. Precise recognition of feeding/swallowing disorders and follow-up intervention are enhanced by awareness and knowledge of global disparities in resources. Initiatives are needed, which address geographic and economic barriers to providing optimal care to children with dysphagia.

Toward Better Understanding of Pediatric Feeding Disorder: A Proposed Framework for Patient Characterization.

To establish a foundation for methodologically sound research on the epidemiology, assessment, and treatment of pediatric feeding disorder (PFD), a 28-member multidisciplinary panel with equal representation from medicine, nutrition, feeding skill, and psychology from seven national feeding programs convened to develop a case report form (CRF). This process relied upon recent advances in defining PFD, a review of the extant literature, expert consensus regarding best practices, and review of current patient characterization templates at participating institutions. The resultant PFD CRF involves patient characterization in four domains (ie, medical, nutrition, feeding skill, and psychosocial) and identifies the primary features of a feeding disorder based on PFD diagnostic criteria. A corresponding protocol provides guidance for completing the assessment process across the four domains. The PFD CRF promotes a standard procedure to support patient characterization, enhance methodological rigor, and provide a useful clinical tool for providers and researchers working with these disorders.

Assessment Across the Life Span: The Clinical Swallow Evaluation.

Purpose This clinical focus article considers the roles of the clinical swallow examination (CSE) as a clinically meaningful assessment method used in both adult and pediatric populations. Method This clinical focus article explores the utility of the CSE across the life span. Specifically, components, reliability, standardized assessments, and limitations of the CSE within the adult and pediatric populations are highlighted. Conclusions The CSE remains a crucial assessment tool for the speech-language pathologist. The experienced clinician can make important judgments regarding patient safety and function. If the CSE is conducted mindfully and methodically, findings can help chart the course of care for individuals needing additional assessment and possibly intervention.

The Pediatric Subjective Global Nutrition Assessment Classifies More Children With Cerebral Palsy as Malnourished Compared With Anthropometry.

BACKGROUND: Nutrition assessment is multidimensional; however, much of the literature examining the nutritional status of children with cerebral palsy (CP) focuses on a single dimension. OBJECTIVE: The aim of the study was to evaluate nutritional status in children and adolescents with CP by comparing results from the Pediatric Subjective Global Nutrition Assessment (SGNA) with results from traditional anthropometric measures. DESIGN: This study was a cross-sectional observational study. PARTICIPANTS/SETTING: This study was conducted in a tertiary hospital outpatient setting in Brisbane, Australia, from February 2017 to March 2018. A total of 89 children (63 boys) with CP aged between 2 and 18 years of age were included. All Gross Motor Function Classification System levels were observed. The majority of children were in Gross Motor Function Classification System I and II (57, 64%) compared with Gross Motor Function Classification System III to V (32, 36%). Children with feeding tubes and those acutely unwell or hospitalized were excluded. MAIN OUTCOME MEASURES: Children were classified as well nourished, moderately malnourished, or severely malnourished by dietitians using the SGNA. Weight, height, body mass index (BMI), triceps skinfold thickness, subscapular skinfold thickness, and mid upper arm circumference were measured and converted to z scores to account for age and sex differences. Moderate malnutrition was defined by z scores -2.00 to -2.99 and severe malnutrition as ≤-3.00 z scores. STATISTICAL ANALYSIS PERFORMED: Multinomial logistic analyses were used to compare results from the SGNA and each single measurement. Continuous outcomes were transformed into z scores. Agreement was assessed with 2 categories: not malnourished and malnourished. Comparison statistics included percent agreement, sensitivity, and specificity. RESULTS: More children were classified as moderately or severely malnourished by SGNA than any of the anthropometric z score cutoffs. The majority of children were well nourished (n = 63) with 20 (22%) moderately malnourished and 6 (7%) severely malnourished by SGNA. The SGNA classified 11 children as malnourished that were not classified as malnourished by BMI. Children with moderate or severe malnutrition by SGNA had lower weight (P < .001, P < .001), BMI (P < .001, P < .001), mid upper arm circumference (P < .001, P < .001), triceps skinfold thickness (P = .01, P = .007), and subscapular skinfold thickness (P = .005, P = .02) z scores than well-nourished children. CONCLUSION: The SGNA identified more potentially malnourished children including children classified as well nourished by the single measurements such as BMI, height, and weight. The SGNA provided a clinically useful multidimensional approach to nutrition assessment for children with CP.

Development and validation of a screening tool for feeding/swallowing difficulties and undernutrition in children with cerebral palsy.

AIM: To develop and validate a screening tool for feeding/swallowing difficulties and/or undernutrition in children with cerebral palsy (CP). METHOD: This cross-sectional, observational study included 89 children with CP (63 males, 26 females; median age 6y 0mo; interquartile range 4y 0mo-8y 11mo), across all Gross Motor Function Classification System levels. Children with feeding tubes were excluded. Children were classified as well-nourished or moderately to severely undernourished, using the paediatric Subjective Global Nutrition Assessment. Eating and drinking abilities were classified using the Eating and Drinking Ability Classification System (EDACS) from mealtime observation and videofluoroscopic swallow studies when indicated. Parents/caregivers answered 33 screening questions regarding their child's feeding/swallowing abilities and nutritional status. The diagnostic ability of each question for identifying children with feeding/swallowing difficulties and undernutrition was calculated and the combination of questions with the highest sensitivity and specificity identified. RESULTS: Feeding difficulties impacted on swallow safety in 26 children (29%) and 26 children (29%) were moderately or severely undernourished. The 4-item final tool had high sensitivity and specificity for identifying children with feeding/swallowing difficulties (81% and 79% respectively) and undernutrition (72% and 75% respectively). The tool successfully identified 100 per cent of children with severe undernutrition and 100 per cent of those classified as EDACS level IV or V. INTERPRETATION: Screening for feeding/swallowing difficulties and undernutrition will enable early identification, assessment, and management for those children in need. WHAT THIS PAPER ADDS: A screening tool with high sensitivities and specificities for identifying children with feeding/swallowing difficulties and undernutrition. The tool identified 100 per cent of children with severe undernutrition. The tool identified 100 per cent of children in Eating and Drinking Ability Classification System levels IV or V.

Instrumental Assessment of Pediatric Dysphagia.

Speech-language pathologists (SLPs) have fulfilled primary roles in the evaluation and management of children with feeding/swallowing disorders for more than five decades. The increased incidence and prevalence of newborns, infants, and children with feeding and swallowing disorders has resulted in increased use of instrumental swallowing evaluations. The videofluoroscopic swallow study and fiberoptic endoscopic evaluation of swallowing are the two most commonly used swallowing assessments by SLPs, with ultrasound used less frequently. This article focuses on updates over the past decade in the procedures and utility of instrumental assessments of swallowing function, and identifies future directions that may enable us to meet the needs of the children who are in our care to attain functional outcomes.

Pediatric Feeding/Swallowing: Yesterday, Today, and Tomorrow.

Speech-language pathologists (SLPs) have played primary roles in the evaluation and management of children with feeding/swallowing disorders for more than five decades. Medical, surgical, and technological advances have improved the survival of young fragile infants and children, many of whom will present with feeding/swallowing problems. Regardless of their underlying etiologies, many of these children are at risk for aspiration-induced lung disease, undernutrition or malnutrition, developmental deficits, and stressful interactions with their caregivers. Unfortunately, our understanding of the physiology/pathophysiology of swallowing and its maturation, the development of standardized and efficacious evaluation and therapy tools, and identification of functional outcomes have not kept pace with our ability to identify children who are at increased risk for dysphagia and the associated sequelae. Given this paucity of evidence to guide practice in pediatrics, clinicians rely upon a combination of data extrapolated from adults with dysphagia, anecdotal reports, and institution-specific guidelines. This article focuses on updates in population demographics and advances in evaluation and treatment over the past decade and identifies future directions that may enable us to meet the needs of the children who are in our care to attain functional outcomes.

Risk of dysphagia and speech and language delay in PHACE syndrome.

PHACE (posterior fossa, hemangioma, arterial lesions, cardiac, and eye) syndrome consists of infantile hemangiomas of the head and neck along with a spectrum of noncutaneous anomalies. Neurodevelopmental abnormalities have also been noted. Here we describe the association between PHACE syndrome and abnormalities in oropharyngeal development and coordination manifesting as dysphagia or speech and language delay. A retrospective chart review was conducted of 34 patients with PHACE syndrome. Data were collected from prior clinical notes and radiographic studies and the results of a comprehensive questionnaire that those who attended the July 2012 PHACE Syndrome Family Conference completed. Seventeen of 34 patients with PHACE syndrome and signs or symptoms of dysphagia or speech or language problems were included for analysis. Nine had dysphagia, seven had a history of cardiac surgery, four had a posterior fossa malformation, and seven had lip or oropharynx hemangiomas. Speech or language delay was noted in 16; posterior fossa abnormalities and lip or oropharynx hemangiomas were the most commonly seen associated finding in this group. There was considerable overlap between subset populations with dysphagia, speech delay, and language delay. A subset of individuals with PHACE syndrome experience dysphagia, speech delay, or language delay. This risk seems to be greater in certain subsets of patients, including those with posterior fossa malformations or lip or oropharynx hemangiomas and those with a history of cardiac surgery. Although this descriptive study was not comprehensive enough to examine prevalence, the high incidence of dysphagia and speech and language delay seen in our cohort warrants future prospective studies to further investigate the association.

Children with central and peripheral neurologic disorders have distinguishable patterns of dysphagia on videofluoroscopic swallow study.

To determine whether findings on videofluoroscopic swallow studies reveal different patterns of dysphagia between children with central and peripheral neurologic disorders, a retrospective study of 118 videofluoroscopic swallow studies was completed. There were 3 groups: cerebral palsy with only spastic features (n = 53), cerebral palsy with dyskinetic features (n = 34), and neuromuscular disorders (myotonic dystrophy I, n = 5; spinal muscular atrophy I-II, n = 8; Duchenne muscular dystrophy, n = 8; other neuromuscular disorder, n = 10). Interpretation of the videofluoroscopic swallow studies was not blinded. The video fluoroscopic swallow study findings were compared dichotomously between the groups. Children with cerebral palsy demonstrated dysphagia in 1 or all phases of swallowing. In neuromuscular disorder, muscle weakness results in pharyngeal residue after swallow. The underlying swallowing problem in neuromuscular disorder is muscle weakness whereas that in cerebral palsy is more complex, having to do with abnormal control of swallowing. This study serves as a first exploration on specific characteristics of swallowing in different neurologic conditions and will help clinicians anticipate what they might expect.

Endoscopic cricopharyngeal myotomy for management of cricopharyngeal achalasia (CA) in an 18-month-old child.

A 6-month-old patient presented with dysphagia and failure to thrive. Video fluoroscopic swallow study (VFSS), esophagogastroduodenoscopy, and manometry were diagnostic for CA. A gastrostomy tube was placed at 8 months. Botulinum toxin injection improved symptoms, but within 10 weeks symptoms returned. At 18 months, an uncomplicated endoscopic CPM was performed. A postoperative VFSS demonstrated cricopharyngeal bar resolution. Within 3 months, patient was feeding orally without a G tube. Pediatric CPA treatment options consist of dilation, botox, and transcervical CPM. To our knowledge, this is the youngest patient treated with endoscopic CPM. Intraoperative video and photographs are presented.

Assessment of pediatric dysphagia and feeding disorders: clinical and instrumental approaches.

Assessment of infants and children with dysphagia (swallowing problems) and feeding disorders involves significantly more considerations than a clinical observation of a feeding. In addition to the status of feeding in the child, considerations include health status, broad environment, parent-child interactions, and parental concerns. Interdisciplinary team approaches allow for coordinated global assessment and management decisions. Underlying etiologies or diagnoses must be delineated to every extent possible because treatment will vary according to history and current status in light of all factors that are often interrelated in complex ways. A holistic approach to evaluation is stressed with a primary goal for every child to receive adequate nutrition and hydration without health complications and with no stress to child or to caregiver. Instrumental swallow examinations that aid in defining physiological swallowing status are needed for some children. Successful oral feeding must be measured in quality of meal time experiences with best possible oral sensorimotor skills and safe swallowing while not jeopardizing a child's functional health status or the parent-child relationship.

Development of swallowing and feeding: prenatal through first year of life.

The development of feeding and swallowing involves a highly complex set of interactions that begin in embryologic and fetal periods and continue through infancy and early childhood. This article will focus on swallowing and feeding development in infants who are developing normally with a review of some aspects of prenatal development that provide a basis for in utero sucking and swallowing. Non-nutritive sucking in healthy preterm infants, nipple feeding in preterm and term infants, and selected processes of continued development of oral skills for feeding throughout the first year of life will be discussed. Advances in research have provided new information in our understanding of the neurophysiology related to swallowing, premature infants' sucking and swallowing patterns, and changes in patterns from preterm to near term to term infants. Oral skill development as texture changes are made throughout the second half of the first year of life is an under studied phenomenon. Knowledge of normal developmental progression is essential for professionals to appreciate differences from normal in infants and children with feeding and swallowing disorders. Additional research of infants and children who demonstrate overall typical development in oral skills for feeding is encouraged and will provide helpful reference points in increasing understanding of children who exhibit differences from typical development. It is hoped that new technology will provide noninvasive means of delineating all phases of sucking and swallowing from prenatal through infancy. Further related topics in other articles of this issue provide a comprehensive review of factors influencing oral intake, growth, nutrition, and neurodevelopmental status of children.

Schoolchildren with dysphagia associated with medically complex conditions.

PURPOSE: This article reviews population trends and general characteristics of children with dysphagia in schools, provides an overview of dysphagia teams and the roles of the speech-language pathologist (SLP) in school and hospital settings, and describes assessment and treatment of swallowing and feeding problems in children with complex medical histories. METHOD: A review of the literature of swallowing and feeding problems in young children and population trends for children who are at risk for dysphagia was completed. Two case studies are presented to illustrate the complexities that are common to this population and to provide practical information to maximize the health and education outcomes of children with dysphagia. RESULTS: SLPs in schools are increasingly evaluating and treating children with dysphagia associated with medically complex conditions. There is a rising incidence in preterm births and the survival of medically fragile children, suggesting that a greater number of children will be at risk for dysphagia in the future. Limited evidence is available to support most therapeutic interventions. CONCLUSION: School-based SLPs are uniquely positioned to identify swallowing and feeding problems, evaluate and treat children with dysphagia, participate on dysphagia teams in the school setting, and interact with the medical team.

Pediatric feeding and swallowing disorders: state of health, population trends, and application of the international classification of functioning, disability, and health.

Over the past two decades, the definition of the STATE OF HEALTH has been expanded from a disease-based condition to one that includes the impact of the disease on an individual's ability to function. The World Health Organization identified the International Classification of Functioning, Disability, and Health (ICF) as a potential framework for coding functional status and establishing a common, standardized language to describe and study health and health-related domains. The ICF could have significant benefits for speech-language pathologists working with children with feeding and swallowing problems. In this article, the authors describe the changes in the definition of health and justification for the ICF, review population trends relevant to pediatric feeding and swallowing disorders, and summarize potential applications of the ICF.

Ethical and legal challenges in feeding and swallowing intervention for infants and children.

Over the past decade, speech-language pathologists (SLPs) have increased their involvement in the assessment and management of infants and children with complex feeding and swallowing problems. Given the complex problems demonstrated by these infants and children that vary across a range of conditions and degrees of severity, SLPs need to increase their knowledge in all the topics covered in this issue. This article will discuss the current state of evidence-based decision making, levels of evidence for studies of treatment efficacy, ethical principles in evidence-based decision making, and ethical decision-making considerations with feeding and swallowing issues using examples of three types of populations of infants and children with complex feeding and swallowing problems.

Reconceptualizing feeding and feeding disorders in interpersonal context: the case for a relational disorder.

The feeding of young children is fundamentally a relational and multisystemic process. Successful treatment of clinically significant feeding problems involves careful assessment of the full range of influences on the feeding relationship and integrated treatment approaches. However, current diagnostic approaches to feeding disorders tend to be reductionistic, exclusively focused on the child as an individual, and overly concerned with exclusionary criteria. Criteria are proposed for "Feeding Disorder Between Parent and Child" that address these limitations and embrace the complexity of feeding problems. A multiaxial diagnosis that describes the child (including medical, developmental, and behavioral characteristics); the parent; the parent-child relationship; and the social and nutritional context of feeding will more accurately speak to treatment planning in this population. The proposed diagnostic criteria were developed and refined on the basis of the available literature and many years of treatment experience across the authors of this article. The proposed diagnosis will support the development and evaluation of treatment packages with components specifically targeted to issues of the child, parent, parent-child interaction, and the broader environment.