A Cross-Sectional Study of Pediatric Feeding Disorder in Children with Cystic Fibrosis.

BACKGROUND: The exact prevalence of feeding problems in children with cystic fibrosis (CF) is unknown. Pediatric feeding disorder (PFD) encompasses poor oral intake with associated medical, nutrition, psychosocial, or feeding skill dysfunction. We hypothesized that PFD is common in CF and aimed to categorize feeding dysfunction across various domains in children with CF. METHODS: An observational cross-sectional study was conducted in children with CF. Data collected included anthropometrics, nutrition data (including need for tube feeding/enteral nutrition [EN] or high-energy beverages, dietary diversity), feeding skills (Pediatric version of the Eating Assessment tool [pEAT]), and psychosocial function (About Your Child's Eating questionnaire [AYCE] in children 2-17 years of age/Behavioral Pediatric Feeding Assessment Scale [BPFAS] in children 12-23 months of age). PFD was defined as poor oral intake with: (a) pEAT score > 5; and/or (b) AYCE or BPFAS score > 2 standard deviation of normative controls; and/or (c) nutrition dysfunction (body mass index/weight-for-length z score < -1 and/or preference of oral high energy beverages or dependence on EN and/or decreased dietary diversity). RESULTS: Of 103 children in the study, 62 (60.1%) had PFD, 7 children (6.8%) were malnourished, 10 needed EN (9.7%), and 30 (29.1%) needed oral high-energy beverages. Dietary diversity was decreased in 42 children (41.5%), 1 child had feeding skill dysfunction, and 11 (10.8%) met criteria for psychosocial dysfunction. CONCLUSION: Almost 2/3rd of children with CF have PFD and many have poor dietary diversity. A significant percentage of children rely on EN and oral supplements, but psychosocial dysfunction is less prevalent.

Protocolized Intervention for Children and Adolescents With Phagophobia.

We aimed to prospectively evaluate the effectiveness of a protocolized shaping intervention in children with phagophobia, which occurs when an aversive oral experience causes fear of swallowing and can result in restricted oral intake and weight loss. Twenty-one children (12 males) diagnosed with phagophobia (mean age 8.5 years) underwent initial medical workup and a pediatric psychologist driven shaping protocol. The outpatient protocol involved graduated food exposure with anxiety reduction strategies to eliminate anxiety and expand participants' diet. The participants completed an average of 6 treatment sessions. Post-treatment, there was a significant increase in weight, total number of foods consumed, and number of foods consumed across food groups and texture. Additionally, self-reported subjective units of distress were low for all participants throughout treatment. We conclude that after appropriate medical workup behavioral treatment is safe and efficacious in children with phagophobia and returns children to premorbid functioning and diet.

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.

Pediatric Feeding Disorder in Children With Short Bowel Syndrome.

OBJECTIVE: We aimed to characterize the prevalence of pediatric feeding disorder (PFD) in short bowel syndrome (SBS) and study factors contributing to the persistence of PFD. METHODS: Single-center retrospective study of patients diagnosed with SBS at age 6 months or younger. Data were collected in 3-month intervals through age 2 years, and every 6 months through age 4 years. Demographic information, anthropometric data, and details regarding nutrition support were recorded and analyzed. RESULTS: We reviewed 28 patients. Of the 21 patients who were weaned off parenteral nutrition, 57.1%, 81.0%, 90.5%, and 100.0% achieved this by 12, 24, 36, and 48 months of age, respectively. Of the 13 patients who were weaned off enteral nutrition, 30.8%, 69.2%, 76.9%, and 100.0% achieved this by 12, 24, 36, and 48 months, respectively. DISCUSSION: The prevalence of PFD was 100.0%, 76.5%, 68.8%, and 70.0% at 1, 2, 3, and 4 years of age, respectively. All patients who exhibited resolution of PFD had an underlying etiology of necrotizing enterocolitis. Median small bowel percentage remaining was greater in patients who exhibited resolution of PFD compared to those who did not. Except for the group of patients seen at 4 years of age, a larger percentage of patients with vomiting/history of requirement of postpyloric feeds were seen among patients with PFD compared to those without PFD. CONCLUSION: PFD is prevalent in children with SBS. Although prevalence decreases over time, children with PFD will continue to require more medical attention than children that do not.

Psychometric Properties of the Infant and Child Feeding Questionnaire.

OBJECTIVES: To report the updated psychometric properties of a child feeding questionnaire and to report the psychometric properties of a screening tool developed from this questionnaire. A secondary objective was to consider if items from a behavior checklist embedded within the Infant and Child Feeding Questionnaire may be useful in making referrals for feeding problems. STUDY DESIGN: Caregivers of children younger than the age of 4 years with pediatric feeding disorders (as defined by International Classification of Diseases, Ninth Revision, criteria) were recruited from 2 outpatient clinics. A comparison group with no feeding problems was recruited during well child checks from community clinics. Caregivers completed a demographic questionnaire and a child feeding questionnaire. Exploratory and confirmatory analyses identified questionnaire items that differentiated groups. Remaining items were summed and area under the curve, sensitivity, and specificity values were calculated to describe the resulting screening tool. ORs of behaviors from the embedded behavior checklist were calculated to determine whether specific behaviors could be useful for referrals. RESULTS: Responses of 989 caregivers (pediatric feeding disorders, n = 331; no feeding problems, n = 650) were obtained. Six questions of the child feeding questionnaire differentiated groups accounting for 60% of variance. Sensitivity (73%) and specificity (93%) were greater when any 2 or more of these 6 items was endorsed. Three items of the embedded feeding behaviors checklist show promise for referrals to specific provider disciplines. CONCLUSIONS: A pediatric feeding disorders screening tool consisting of 6 questions from a child feeding questionnaire is psychometrically sound. Use of this tool may expedite referrals for treatment. Further study of the embedded behavior checklist may be useful for clinical referrals.

A clinical description of children with solid organ transplants who present with feeding disorder.

Pediatric solid organ transplant recipients have long-standing malnutrition concerns related to their pretransplant medical status. The targeted nutrition therapy utilized pre-, peri-, and post-transplantation may have the adverse effect of impeding normally developing feeding skills, particularly in very young children. Little is known about the relationship between transplantation and feeding disorders of childhood. The purpose of this study was to describe severity of feeding disorder and parental stress in patients with transplant compared to children followed in a specialty feeding clinic and the general community. Sixty-four children, comprised of 32 children with solid organ transplant ages 2 months to 12 years and 32 matched control patients diagnosed with a feeding disorder without history of solid organ transplant, were reviewed. All children were from the Feeding, Swallowing, and Nutrition Clinic at a single children's hospital. Findings indicate that patients who received a transplant and presented with a feeding problem had worse symptoms of feeding disorder than are typically found in the general community. These feeding problems disrupt mealtime behavior, caregiver and child relationship within a mealtime context, and may result in maladaptive feeding strategies used by families. When transplanted children present with feeding disorders, they are severe and have multiple effects on both the child and the feeding dynamic between the child and the child's caregivers. Further investigation may help us to better understand the relationship between transplantation and symptoms of feeding disorder.

Group Treatment of Fecal Incontinence: A Description of an Interdisciplinary Intervention.

INTRODUCTION: Approximately 5% of children in the United States have chronic fecal incontinence. Unfortunately, standard medical management of fecal incontinence fails in 20% to 60% of cases. A combined medical-behavioral model is often recommended in these cases. The purpose of this pilot study was to describe an interdisciplinary group-based treatment for fecal incontinence in school-aged children, and to present a description of changes in treatment adherence rates that affect clinical effectiveness. METHOD: Poop group employed a developmentally appropriate model of care in which caregivers and children participated in separate but simultaneously held therapy groups. This interdisciplinary 6-week protocol is designed to increase appropriate stooling, decrease soiling events, and increase medication adherence pre- to post-treatment. Group sessions focus on the GI system, medication, toilet sitting posture, hydration, fiber, and behavior contracts. In addition, participant families consult with an Advanced Nurse Practitioner privately at each session discussing symptoms and making medication modifications as needed. RESULTS: Nineteen families completed the 6-week protocol. Appropriate stool frequency was improved (P ≤ 0.01), and soiling was reduced (P ≤ 0.00). Medication adherence was also improved (P ≤ 0.04). Treatment results were maintained at 1-month follow-up. DISCUSSION: A developmentally targeted intervention and interdisciplinary focus of treatment likely account for treatment successes. CONCLUSION: Poop group may be an effective interdisciplinary treatment option for families of children who fail traditional outpatient treatment.

Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework.

Pediatric feeding disorders (PFDs) lack a universally accepted definition. Feeding disorders require comprehensive assessment and treatment of 4 closely related, complementary domains (medical, psychosocial, and feeding skill-based systems and associated nutritional complications). Previous diagnostic paradigms have, however, typically defined feeding disorders using the lens of a single professional discipline and fail to characterize associated functional limitations that are critical to plan appropriate interventions and improve quality of life. Using the framework of the World Health Organization International Classification of Functioning, Disability, and Health, a unifying diagnostic term is proposed: "Pediatric Feeding Disorder" (PFD), defined as impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. By incorporating associated functional limitations, the proposed diagnostic criteria for PFD should enable practitioners and researchers to better characterize the needs of heterogeneous patient populations, facilitate inclusion of all relevant disciplines in treatment planning, and promote the use of common, precise, terminology necessary to advance clinical practice, research, and health-care policy.

Safety of Appetite Manipulation in Children with Feeding Disorders Admitted to an Inpatient Feeding Program.

OBJECTIVE: Appetite manipulation can be effective in weaning children off gastrostomy tube feeding dependence but can cause dehydration, hypoglycaemia, and ketone body production, which is anorexigenic. As the safety of this approach has not been described, our aim was to describe adverse events observed when weaning children from G-tube dependence using our appetite manipulation protocol. METHODS: This was a retrospective study of prospectively collected data of patients who completed our inpatient tube-weaning protocol. Daily safety parameters included twice-daily urine specific gravities and urine ketones and fasting capillary blood glucose. Graded clinical interventions to manage adverse events were collected. RESULTS: A total of 143 children with a mean age of 4.8 ±â€Š2.4 years were seen in the inpatient feeding program of which 74 (51.7%) were male. The children were hospitalized 10.1 ±â€Š2.5 days with the vast majority being discharged between days 11 and 14. Overall, 78.2% of patients experienced at least 1 adverse event: urine specific gravity >1.020 was seen in 60.5%, ketonuria in 48.9%, and hypoglycemia (≤60 mg/dL) in 13.4%. Only 2 children had blood glucose levels <40 mg/dL and these were corrected with oral supplementation. Graded clinical interventions to manage adverse events included oral rehydration in 89.9% of children and supplemental tube feeding in 25.2%. CONCLUSIONS: Adverse effects are common when appetite manipulation is used to wean children off G-tube dependence. Anticipating, monitoring, and having a clear intervention plan in a closely monitored setting are necessary to safely use this method.

Reduced Functional Connectivity Between the Hypothalamus and High-order Cortical Regions in Adolescent Patients With Irritable Bowel Syndrome.

The hypothalamus plays a critical role in maintaining visceral homeostasis. Altered hypothalamus activation has been implicated in functional gastrointestinal disorders, including irritable bowel syndrome (IBS). One important aspect of homeostatic regulation is the cortical modulation of limbic and paralimbic subsystems, including the hypothalamus, which in turn affects the descending regulatory processes mediating visceral homeostasis. Using neuroimaging, we evaluated hypothalamus functional connectivity in adolescent patients with IBS and age-matched healthy controls who received rectal distension stimulations. More extensive hypothalamus connectivity was observed in liminal than subliminal condition in controls, but not in patients with IBS. Compared with controls, patients with IBS showed significantly reduced hypothalamus connectivity in the bilateral prefrontal cortices, supplementary motor and premotor areas, bilateral sensorimotor cortex, and limbic subareas, which are specifically involved in homeostatic regulation. The findings support the generalized homeostatic regulation model that reduced cortical and limbic modulations of hypothalamus functioning underlies disrupted visceral homeostasis in patients with IBS.

Preliminary Study of a Caregiver-based Infant and Child Feeding and Swallowing Screening Tool.

OBJECTIVES: The Infant and Child Feeding Questionnaire (ICFQ) was created to facilitate early detection of feeding and swallowing problems. This is achieved by promoting effective communication between caregivers and health care providers resulting in referral for evaluation and treatment of feeding and swallowing problems by specialists. The purpose of this pilot study was to determine whether items from the ICFQ could be used to screen for differences between children with known feeding problems (FP) and without known feeding problems (NFP). METHODS: Caregivers of children ages 36 months or younger with FP and NFP were recruited to complete the ICFQ and demographic questions. T tests were completed to compare demographic characteristics of the research groups. Responses to ICFQ items were analyzed using receiver operating characteristic analysis and odds ratios to determine whether questionnaire items distinguished between study groups. RESULTS: Sixty-four caregivers of children with FP and 57 caregivers of NFP children were recruited. Three participants in the NFP group did not meet inclusion criteria and were excluded from analysis. A combination of 4 ICFQ questions distinguished between groups (receiver operating characteristic = 0.974). Significant odds ratios were also found for 9 feeding behaviors that distinguished between groups. CONCLUSIONS: A subset of items from the ICFQ showed promise for distinguishing FP from NFP groups. Future work will expand the regional representation of the participant samples and obtain equal representation of participants across all age-adjusted questionnaires to determine whether the same combination of ICFQ items continues to distinguish between FP and NFP groups.

Empirically Derived Patterns of Pain, Stooling, and Incontinence and Their Relations to Health-Related Quality of Life Among Youth With Chronic Constipation.

Objective: Chronic constipation is associated with pain, stress, and fecal incontinence, which negatively impact health-related quality of life (HRQoL); however, it is unclear if patterns of pain, stool frequency, and incontinence are differentially associated with HRQoL in youth with chronic constipation. Methods: 410 caregivers completed a demographics and symptoms form, the Parental Opinions of Pediatric Constipation, Pediatric Symptom Checklist, and the Functional Disability Inventory. Results: Stooling patterns were derived using Latent Variable Mixture Modeling. A three-class model emerged: withholding/avoiding ( WA ), pain , and fecal incontinence ( FI ). The pain class reported the greatest amount of disease burden/distress, greatest impairments in illness-related activity limitations, more psychosocial problems, and, along with the FI class, elevated levels of family conflict. The FI class reported the greatest amount of parental worry of social impact. Conclusions: Youth with chronic constipation who experience pain or fecal incontinence may be at a greater risk for specific HRQoL problems such as illness-related activity limitations, psychosocial issues, disease burden and worry, and family conflict.

A multicenter study on childhood constipation and fecal incontinence: effects on quality of life.

OBJECTIVE: To describe the effects of childhood functional constipation compared with functional constipation plus fecal incontinence on quality of life, evaluating effects on physical, psychosocial, and family functioning. STUDY DESIGN: This prospective, multicenter study collected data from 5 regional children's hospitals. Children meeting Rome III criteria for functional constipation were included. Parents completed the following 5 instruments: Pediatric Quality of Life Inventory (PedsQL), PedsQL-Family Impact Module, Functional Disability Inventory-Parent Version, Pediatric Inventory for Parents (PIP), and Pediatric Symptom Checklist-Parent Report. RESULTS: Families of 410 children aged 2-18 years (mean [SD], 7.8 [3.5] years; 52% male) were included. Children with functional constipation+fecal incontinence had worse quality of life than children with functional constipation alone (PedsQL Total Score, P ≤ .03). Older children with functional constipation + fecal incontinence had lower quality of life than their younger counterparts (PedsQL Total Score, P ≤ .047). Children with functional constipation+fecal incontinence had worse family functioning (PedsQL-Family Impact Module Total Score, P ≤ .012), greater parental stress (PIP-F Total Score, P ≤ .016; PIP-D Total Score, P ≤ .013), and poorer psychosocial functioning (Pediatric Symptom Checklist Total Score, P ≤ .003). There were no statistically significant between-group differences in physical functioning based on the functional Disability Inventory. CONCLUSION: Fecal incontinence significantly decreases quality of life compared with functional constipation alone in children. Older children with functional constipation+fecal incontinence may be at particular risk. Strategies for early identification and treatment of constipation along with diagnosis and treatment of related adjustment difficulties may mitigate the negative impact of this highly prevalent condition.

Measuring Health-Related Quality of Life With the Parental Opinions of Pediatric Constipation Questionnaire.

OBJECTIVES: The purpose of this study was to develop a caregiver-completed constipation condition-specific health-related quality of life (HRQL) instrument. METHODS: 410 caregivers of children aged 2-18 years completed the Parental Opinions of Pediatric Constipation (POOPC), the PedsQL Generic Core Scales, PedQL Family Impact Module, Pediatric Symptom Checklist, the Functional Disability Inventory, the Pediatric Inventory for Parents, and a demographic questionnaire. Exploratory and confirmatory factor analyses were conducted to assess the psychometric properties of the POOPC. RESULTS: Analyses yielded four factors called Parental Burden/Distress, Family Conflict, Difficulties with the Medical Team, and Worry about Social Impact that reflect problems in HRQL secondary to constipation and soiling, which were generally more strongly correlated with similar measures relative to a general measure of youth's psychosocial functioning. CONCLUSION: The POOPC is a psychometrically sound measure, which may be useful to clinicians and researchers identifying domains of treatment needs for children and their families.

Behavioral Management of Feeding Disorders of Childhood.

Feeding disorders, characterized by suboptimal intake and/or lack of age-appropriate eating habits, are common and may be seen in up to 45% of children. Feeding disorders are a significant concern to both the affected families and to the providers who treat them. Fortunately, there are well-established behavioral treatments which have been shown to be highly efficacious. This article provides an overview of behavioral assessment and treatment of pediatric feeding disorders, provides guidance in treatment planning, and provides information which may be useful in considering if additional psychological consultation may be beneficial.

Feeding dysfunction in children with single ventricle following staged palliation.

OBJECTIVE: To determine the prevalence of feeding dysfunction in children with single ventricle defects and identify associated risk factors. STUDY DESIGN: Patients aged 2-6 years with single ventricle physiology presenting for routine cardiology follow-up at the Children's Hospital of Wisconsin were prospectively identified. Parents of the patients completed 2 validated instruments for assessment of feeding dysfunction. Chart review was performed to retrospectively obtain demographic and diagnostic data. RESULTS: Instruments were completed for 56 patients; median age was 39 months. Overall, 28 (50%) patients had some form of feeding dysfunction. Compared with a normal reference population, patients with single ventricle had statistically significant differences in dysfunctional food manipulation (P < .001), mealtime aggression (P = .002), choking/gagging/vomiting (P < .001), resistance to eating (P < .001), and parental aversion to mealtime (P < .001). Weight and height for age z-scores were significantly lower in subjects with feeding dysfunction (-0.84 vs -0.33; P < .05 and -1.46 vs -0.56; P = .001, respectively). Multivariable analysis identified current gastrostomy tube use (P = .02) and a single parent household (P = .01) as risk factors for feeding dysfunction. CONCLUSION: Feeding dysfunction is common in children with single ventricle defects, occurring in 50% of our cohort. Feeding dysfunction is associated with worse growth measures. Current gastrostomy tube use and a single parent household were identified as independent risk factors for feeding dysfunction.

Systematic review of psychological interventions for pediatric feeding problems.

OBJECTIVE: To conduct a systematic review of the research evaluating the effect of psychological interventions for pediatric feeding problems. METHODS: A search was conducted to identify studies using psychological interventions for pediatric feeding problems published between 1998 and 2013. Randomized controlled trials (RCTs) and nonrandomized studies that examined aggregated outcome data were included. Primary outcomes were child mealtime behavior, nutritional status, and caregiver stress. A risk of bias assessment was conducted and the quality of the evidence rated using Grading of Recommendations Assessment, Development, and Evaluation methodology. RESULTS: 13 studies were identified and a narrative synthesis framework was used to report findings. CONCLUSIONS: The preponderance of evidence suggests positive effects of psychological intervention for the treatment of feeding problems. However, limited data and the paucity of studies using RCT methodologies limit conclusions that can be drawn regarding the efficacy of these interventions. Future studies using more rigorous research methods are needed to enhance understanding of these interventions.

Foundational and Clinical Science Integration in a Team-Based Learning Module Modeling Care of a Patient With Dyslipidemia.

Introduction: Foundational and clinical science integration, a long-standing goal of undergraduate medical education, benefits learners by promoting retention of critical knowledge and skills as well as their transfer to the clinical setting. We implemented a team-based learning (TBL) module in which foundational knowledge and skills from the disciplines of biochemistry, nutrition, and genetics were leveraged in a simulated patient encounter for diagnosis and management of a patient with dyslipidemia. Methods: The TBL was deployed in a first-year medical student cardiovascular system course with 125 students over three academic years. Following individual and team readiness assurance tests (iRAT and tRAT, respectively), teams participated in an initial application exercise requiring consideration of clinical and laboratory data and other risk factors to engage the patient in a shared decision-making process. Using dietary and family history narratives in subsequent application exercises, teams completed recommendations for an individualized diet plan and an assessment of potential disease inheritance patterns to formulate appropriate patient care management strategies. Results: Student engagement with prelearning materials and session team activities was high as judged by RAT performance and application exercise outcomes: iRAT question performance ranged from 89% to 99% for individual items, and tRAT performance was routinely 100%. Learners reported that the exercises were impactful and believed the learned foundational knowledge and skills were transferable to future patient care. Discussion: The dyslipidemia TBL module provides an illustration for early clinical learners of how foundational knowledge and skills can be operationalized and transferred for optimal patient care.

Nutritional and psychosocial outcomes of gastrostomy tube-dependent children completing an intensive inpatient behavioral treatment program.

OBJECTIVES: Limited published data describe the long-term effects of behavioral strategies to wean children from gastrostomy tube (GT) feeding dependence. This study presents data relating to nutritional and psychosocial outcomes observed during a 1-year period in medically complex GT feeding-dependent patients who completed an inpatient behavioral-based tube weaning protocol. METHODS: This was a retrospective study of prospectively and retrospectively collected data associated with a clinical cohort of 77 children diagnosed as having a feeding disorder, GT feeding dependence (>1 year), and an inability to maintain acceptable growth via oral feeding completing an inpatient tube weaning protocol. Nutritional data (percentage of ideal body weight, and oral energy intake as percent ofenergy goal) and psychosocial data (mealtime behavior problems, quality of caregiver and child interactions, and parenting stress) were assessed pre- and post-hospitalization. Nutritional data were also monitored longitudinally at 1, 3, 6, and 12 months postreatment. Data were grouped for retrospective analysis. RESULTS: Mealtime environment and feeding behaviors significantly improved, and all of the patients demonstrated reductions in tube dependence aside from 1 treatment failure. Fifty-one percent of patients were fully weaned from tube feeding after 2 weeks and an additional 12% completed weaning in the outpatient follow-up clinic within 1 year. Patients maintained nutritional stability at the 1-year posttreatment follow-up appointment. CONCLUSIONS: Inpatient behavioral interventions are highly effective and safe for transitioning long-term tube feeding children to oral feeding.