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.

Outcomes for Feeding Tube-Dependent Children With Oral Aversion in an Intensive Interdisciplinary Treatment Program.

Purpose Feeding challenges in children are common, at times reaching a severity that requires the placement and long-term use of enteral feedings. A significant barrier to advancing the oral eating of some tube-dependent children is the presence of oral aversion. Although some research exists regarding the treatment of tube-dependent children who are averse to food or the process of eating, specifically, there has yet to be an examination of children who are truly "orally" averse-resisting not just the presentation of food or liquid but also nonnutritive stimuli presented extra- or intra-orally. Method Using a retrospective chart review, the current study aimed to examine the treatment outcomes of 18 feeding tube-dependent children with significant oral aversion (nine boys, nine girls; M age = 46.7 months, SD = 20.0 months, range: 11.4-89.3 months) as compared to 29 tube-dependent, but nonorally averse, clinical controls. Children completed approximately 6-8 weeks of intensive interdisciplinary feeding treatment. Results Analyses revealed significant improvements in all measured treatment outcomes for both patient groups, including children's rates of acceptance and maladaptive mealtime behavior. Significant reductions in tube use were also observed across both groups, with tube utilization decreasing, on average, by 76.2% for orally averse and by 64.3% for nonorally averse children by program discharge. Conclusion Results demonstrate the therapeutic benefits of intensive interdisciplinary intervention for both groups of tube-dependent children, highlighting that orally averse children, believed to be an especially challenging subset of pediatric feeding patients, demonstrate similarly positive treatment responses. Interestingly, in this preliminary examination, orally averse children demonstrated significantly greater reductions in tube utilization following discharge when compared with their nonorally averse clinical peers.

Examination of the association between lifestyle behavior changes and weight outcomes in preschoolers receiving treatment for obesity.

OBJECTIVE: Preschoolers (ages 2-5 years) have been significantly underrepresented in the obesity treatment outcome literature, despite estimates that 12.1% are already obese. As such, little is known about the most important intervention targets for weight management within this age group. The aims of this study were (a) to examine lifestyle behavior changes for 30 obese preschoolers participating in a weight-control intervention and (b) to explore which lifestyle behavior changes predicted changes in body mass index (BMI) z score. METHOD: Preschooler height, weight, diet (three 24-hr recalls), physical activity (accelerometry), and television use (parent report) were measured at baseline and posttreatment (6 months). A linear regression was conducted to examine pre- to posttreatment changes in diet (i.e., intake of calories, sugar-sweetened beverages, fruits and vegetables, and sweet and salty snacks) and activity (i.e., moderate-to-vigorous activity and television use) behaviors on changes in BMI z score. RESULTS: Despite significant reductions in sugar-sweetened beverage intake and television use, and increases in fruit and vegetable intake, only reductions in absolute caloric intake significantly predicted reductions in BMI z score. CONCLUSION: Our findings suggest that attaining healthy caloric goals may be the most important component of weight-control interventions for preschoolers. Future research using innovative methodologies, such as the Multiphase Optimization Strategy, may be helpful to prospectively identifying the lifestyle behavior changes that are most effective in helping families to achieve healthy weight outcomes for preschoolers and thereby improve intervention efficiency and decrease treatment burden for families.

Self-reported and parent-reported pain for common painful events in high-functioning children and adolescents with autism spectrum disorder.

OBJECTIVES: Previous research suggests that children with autism spectrum disorders (ASD) are at a higher risk for painful experiences, but there is limited research examining pain in children with ASD. METHODS: The current study examined self-reported and parent-reported pain in 20 high-functioning youth with ASD (17 boys; 3 girls) and 20 typically developing controls (16 boys; 4 girls) ranging in age from 9 to 18 years and matched on age and IQ. Participants with and without ASD rated their hypothetical pain in a series of pictures depicting common childhood situations. They also rated the amount of pain they would expect to feel (using the Faces Pain Scale-Revised and a Numeric Rating Scale) in a series of validated hypothetical pain situations depicted in cartooned images (eg, scraping knee on sidewalk). Parents rated the amount of pain they would expect their child to show in each of the same cartoon stimuli. RESULTS: There were no significant differences between pain vignette ratings of youth with ASD and their non-ASD peers or in the ratings provided by their parents. High-functioning youth with ASD were able to successfully use both of the self-report scales to rate pain. DISCUSSION: This is the first study to successfully obtain self-report of pain from youth with ASD. Implications for the understanding of pain and pain assessment in high-functioning youth with ASD are discussed.

Impact on parents of receiving individualized feedback of psychological testing conducted with children as part of a research study.

While many researchers accept the principle that participants have a right to receive information learned from their participation in research, there are few studies examining the impact of receiving results on participants. This study was developed to examine the impact on parents of the receipt of individual results of research-based psychological testing of their children. A summary of the child's individual results of standardized measures of language and development was sent by mail with the questionnaire designed to assess the impact of receiving results. Response rate from the mailed questionnaire was 55.6% (n=74/133). Most parents reported the results as helpful and positive. The majority would receive results again. Overall, the sharing of individualized feedback from psychological testing conducted as part of a research study was well accepted by parents. This practice appears ethically permissible with appropriate support options for addressing participant concerns upon receiving the results as well options for clinical follow-up for the child.

The behavioural expression of empathy to others' pain versus others' sadness in young children.

Little is known about how children develop or express their empathy for another individual's pain. The current study compared the behavioural expression of empathy for pain with that for emotion, specifically sadness, in children. One hundred twenty children (60 boys, 60 girls) between the ages of 18 and 36 months (M=26.44 months; SD=5.17) were assessed for their empathy-related behavioural responses to simulations of an adult's pain and sadness, each presented separately. Children were more likely to be distressed by, but also more likely to be prosocially responsive to, another's sadness. Conversely, children were more likely to actively play during another's pain. Despite these differences, principal component analyses conducted separately for pain and sadness revealed conceptual similarities across simulation type. Components labelled as Empathic Concern and Personal Distress emerged for both simulations. Hierarchical regression analyses examining the influence of developmental (ie, age, sex) and interindividual (ie, temperament, social-emotional development, language abilities) variables of interest in children's empathy-related responses were conducted for each pain and sadness component. Age differences emerged only for pain. There were no sex differences for either simulation. Temperament showed some predictive value in how children would respond to sadness. Social-emotional variables showed some predictive value in how children would respond to pain and sadness. Language showed very little predictive value. These findings highlight both conceptual similarities across, and important differences between, children's expressions of empathy for pain and for sadness. Pain appears to be more easily ignored and results in fewer prosocial responses in children.

Stigma of epilepsy.

Epilepsy directly affects 50 million people worldwide. Most can achieve excellent seizure control; however, people living with epilepsy continue to suffer from enacted or perceived stigma that is based on myths, misconceptions and misunderstandings that have persisted for thousands of years. This paper reviews the frequency and nature of stigma toward epilepsy. Significant negative attitudes prevail in the adolescent and adult public worldwide leading to loneliness and social avoidance both in school and in the workplace. People with epilepsy are often wrongly viewed as having mental health and antisocial issues and as being potentially violent toward others. Twenty-five percent of adults having epilepsy describe social stigma as a result of their epilepsy. They fear rejection and often feel shame or loneliness from this diagnosis. The psychosocial and social impact of epilepsy is significant. Yet few specific interventions have been demonstrated to alter this perception. The effect on public education is primarily short-term, while change over the long-term in attitudes and inaccurate beliefs have not presently been proven effective. School education programming demonstrates improved knowledge and attitude a month after a classroom intervention, but persisting change over a longer period of time has not been evaluated. In-depth adult psycho-educational programs for adults with epilepsy improves knowledge, coping skills and level of felt stigma. However these gains have not demonstrated persistence over time. Myths, misconceptions and misunderstandings about epilepsy continue and programs aimed at increasing knowledge and reducing negative public attitudes should be enhanced.

The role of child life in pediatric pain management: a survey of child life specialists.

UNLABELLED: Pain management is often described as a component of child life specialists' work. No research has described the specific pain management strategies used by child life specialists. The objectives of this study were to determine child life specialists' use of nonpharmacological strategies, to describe the perceived efficacy of these strategies, to determine how much training child life specialists had in these various strategies, and to determine what demographic characteristics predict the use of evidence-based techniques. Six hundred seven child life specialists from hospitals and health centers across North America responded to an online survey (response rate: 85.4%). Results indicate that child life specialists use a variety of techniques with varying degrees of perceived efficacy. The most commonly endorsed techniques were providing information/preparation, comforting/reassurance, and positive reinforcement. Respondents reported receiving substantial training in some techniques (eg, providing information/preparation, medical play) and high interest in receiving additional training in all techniques. Certification status, the proportion of patients for whom participants reported providing pain management services, and participants' perceived levels of knowledge and skill emerged as significant predictors of the use of evidence-based strategies. The results of this survey suggest that child life specialists are actively involved in pediatric pain management. PERSPECTIVE: American and Canadian child life specialists were surveyed to assess their involvement in managing the pain of pediatric patients. Findings of the survey indicate that child life specialists are involved in the management of pediatric pain and are receptive to additional training in evidence-based techniques.