Leveraging Institutional Support to Build an Integrated Multidisciplinary Care Model in Pediatric Inflammatory Bowel Disease.

While the biopsychosocial nature of inflammatory bowel disease (IBD) is now well accepted by clinicians, the need for integrated multidisciplinary care is not always clear to institutional administrators who serve as decision makers regarding resources provided to clinical programs. In this commentary, we draw on our own experience in building successful integrated care models within a division of pediatric gastroenterology (GI) to highlight key considerations in garnering initial approval, as well as methods to maintain institutional support over time. Specifically, we discuss the importance of making a strong case for the inclusion of a psychologist in pediatric IBD care, justifying an integrated model for delivering care, and addressing finances at the program level. Further, we review the benefit of collecting and reporting program data to support the existing literature and/or theoretical projections, demonstrate outcomes, and build alternative value streams recognized by the institution (e.g., academic, reputation) alongside the value to patients. Ultimately, success in garnering and maintaining institutional support necessitates moving from the theoretical to the practical, while continually framing discussion for a nonclinical/administrative audience. While the process can be time-consuming, ultimately it is worth the effort, enhancing the care experience for both patients and clinicians.

Using quality improvement methods to increase use of pain prevention strategies for childhood vaccination.

AIM: To increase evidence-based pain prevention strategy use during routine vaccinations in a pediatric primary care clinic using quality improvement methodology. METHODS: Specific intervention strategies (i.e., comfort positioning, nonnutritive sucking and sucrose analgesia, distraction) were identified, selected and introduced in three waves, using a Plan-Do-Study-Act framework. System-wide change was measured from baseline to post-intervention by: (1) percent of vaccination visits during which an evidence-based pain prevention strategy was reported as being used; and (2) caregiver satisfaction ratings following the visit. Additionally, self-reported staff and caregiver attitudes and beliefs about pain prevention were measured at baseline and 1-year post-intervention to assess for possible long-term cultural shifts. RESULTS: Significant improvements were noted post-intervention. Use of at least one pain prevention strategy was documented at 99% of patient visits and 94% of caregivers were satisfied or very satisfied with the pain prevention care received. Parents/caregivers reported greater satisfaction with the specific pain prevention strategy used [t(143) = 2.50, P ≤ 0.05], as well as greater agreement that the pain prevention strategies used helped their children's pain [t(180) = 2.17, P ≤ 0.05] and that they would be willing to use the same strategy again in the future [t(179) = 3.26, P ≤ 0.001] as compared to baseline. Staff and caregivers also demonstrated a shift in attitudes from baseline to 1-year post-intervention. Specifically, staff reported greater agreement that the pain felt from vaccinations can result in harmful effects [2.47 vs 3.10; t(70) = -2.11, P ≤ 0.05], less agreement that pain from vaccinations is "just part of the process" [3.94 vs 3.23; t(70) = 2.61, P ≤ 0.05], and less agreement that parents expect their children to experience pain during vaccinations [4.81 vs 4.38; t(69) = 2.24, P ≤ 0.05]. Parents/caregivers reported more favorable attitudes about pain prevention strategies for vaccinations across a variety of areas, including safety, cost, time, and effectiveness, as well as less concern about the pain their children experience with vaccination [4.08 vs 3.26; t(557) = 6.38, P ≤ 0.001], less need for additional pain prevention strategies [3.33 vs 2.81; t(476) = 4.51, P ≤ 0.001], and greater agreement that their doctors' office currently offers pain prevention for vaccinations [3.40 vs 3.75; t(433) = -2.39, P ≤ 0.05]. CONCLUSION: Quality improvement methodology can be used to help close the gap in implementing pain prevention strategies during routine vaccination procedures for children.

Implementing psychological therapies for functional GI disorders in children and adults.

INTRODUCTION: Functional GI disorders (FGIDs) are common in adults and children. Psychological factors play an important role in the onset and maintenance of FGIDs and in explaining the associated disability. Psychological treatments such as Cognitive Behavioral Therapy and Hypnotherapy have been found efficacious in FGIDs but Integrating psychological treatments into traditionally medically-oriented care can be challenging. AREAS COVERED: This review outlines the case for integrating psychological therapies into medical care for FGIDs and examine various models of integrated care that can be adapted to fit specific practice scenarios. Expert commentary: We advise integrating a psychologist in the care and treatment planning of every patient. Clinic-specific needs dictate how integrated care for patients with FGIDs can be delivered.

Trajectories of oral medication adherence in youth with inflammatory bowel disease.

OBJECTIVE: To examine longitudinal trajectories of oral thiopurine adherence over a 180-day interval in a sample of youth with inflammatory bowel disease (IBD) and to identify the role of disease activity, length of time since diagnosis, and regimen complexity in predicting adherence trajectory class membership. METHOD: Participants included 96 adolescents (M age = 14.32 years) with IBD. Oral medication adherence was assessed via MEMS Track Caps (i.e., an electronic monitor that allows for real-time assessment of adherence) for 6 months, after which time devices were collected and data were downloaded. Medical record reviews provided information about participants' disease activity, length of time since diagnosis, and regimen complexity (including both medications and supplements) at the time of study enrollment. RESULTS: Two distinct adherence trajectory classes emerged: Group 1 represented those with consistently near-perfect adherence, whereas Group 2 represented those with mild nonadherence that increased with time. Complexity of medication regimen emerged as the only predictor of trajectory class, with adolescents whose regimen involved more than 1 daily medication administration time being more likely to be classified in Group 2 (i.e., the consistently near-perfect adherence group) than those whose regimen involved only 1 daily medication administration time. CONCLUSIONS: Distinct classes of adherence trajectories in pediatric IBD can be identified with longitudinal data collection approaches; however, disease and regimen factors offered limited value in predicting adherence trajectory class. Future research should utilize longitudinal conceptualizations of adherence and examine alternative predictors of declining adherence over time.

Understanding and treatment of chronic abdominal pain in pediatric primary care.

This study examined the practices used by primary care pediatricians to assess and treat chronic abdominal pain (CAP), as an initial step in guiding clinical practice guideline (CPG) development. A survey was mailed to a random sample of office-based pediatrician members (primary care pediatricians [PCPs]) of the American Medical Association. PCPs (n = 470) provided information about the typical presentation of CAP, assessment/treatment approaches used in their own practice, their definition of a functional gastrointestinal disorder (FGID), and their familiarity with the Rome Criteria for diagnosing FGIDs. Substantial variability among PCPs was noted across all these areas. Results suggest that perceptions and practices of pediatric CAP vary widely among PCPs; no single standard of care emerged to guide development of a CPG for this population. Future research should evaluate the efficacy of specific strategies currently in use to identify potential opportunities for improving assessment and treatment of CAP in pediatric primary care.

No guts, no glory: models of integrated care within a GI subspecialty practice.

The focus in pediatric medicine has shifted from a concentration on mortality and morbidity to a more comprehensive view encompassing the physical, social, and psychological aspects of health. What follows is a description of four integrated, collaborative care clinics within the GI subspecialty at Children's Mercy Kansas City that specifically address this trend in pediatric healthcare. With these descriptions, we hope to inform broader acceptance and utilization of similar models across other pediatric populations.

Intestinal permeability in children/adolescents with functional dyspepsia.

BACKGROUND: An altered intestinal mucosal barrier has been demonstrated in subsets of patients with IBS and FAP and may be an additional biological factor contributing to symptom generation in children with FD. The objective of this study was to determine if intestinal permeability is increased in children/adolescents with functional dyspepsia (FD) and whether intestinal permeability is correlated with mucosal inflammation and/or symptoms of anxiety or depression in this population. METHODS: A sugar absorption test was performed in 19 patients with FD and 19 controls. Anxiety and depression were assessed in both groups utilizing a standard questionnaire. In FD patients, duodenal mean and peak mast cell and eosinophil densities were determined. RESULTS: Intestinal permeability as measured by the sugar absorption test did not differ between children with FD and controls. In children with FD, there was no correlation between permeability and mast cell density, eosinophil density, anxiety scores, or depression scores, respectively. CONCLUSIONS: Pediatric FD does not appear to be associated with increased small bowel intestinal permeability, however, there are some limitations to the current study. TRIAL REGISTRATION: ClinicalTrials.gov; NCT00363597.

Validation of methods to assess potential biomarkers in pediatric patients with esophageal eosinophilia.

AIM: To validate methods for determining mast cell density, extracellular major basic protein content, and presence of fibrosis in esophageal eosinophilia. METHODS: Twenty specimens with > 20 eosinophils/high-power field (hpf) classified as high eosinophil density (HE) and 20 specimens with < 5 eosinophils/hpf classified as low esophageal density (LE) were identified. All 40 specimens underwent immunohistochemical staining and trichrome staining. Mast cell density, extracellular major basic protein (MBP) density, and presence of subepithelial fibrosis were assessed in a standardized manner. All specimens were evaluated by two separate observers and by a single observer on two separate occasions to evaluate reproducibility of the methods. RESULTS: A strong inter-observer correlation was noted for both peak and mean mast cell counts (r = 0.725, P < 0.0001 and r = 0.823, P < 0.0001). A strong intra-observer correlation also was noted for both peak and mean mast cell counts (r = 0.752, P < 0.0001 and r = 0.878, P < 0.0001). A very strong inter-observer correlation was noted for both peak (τ = 0.867, P < 0.0001) and mean extracellular MBP densities (r = 0.925, P < 0.0001). A very strong intra-observer correlation was noted for both peak (τ = 0.875; P < 0.0001) and mean extracellular MBP densities (r = 0.956, P < 0.0001). Excellent inter-rater reliability was found for fibrosis (κ = 0.887). Mast cell and MBP densities, as well as presence of fibrosis, were significantly increased in HE vs LE. The HE group had significantly higher intraepithelial mast cell peak (29.35 ± 21.61 vs 12.45 ± 8.26, P = 0.002) and mean (19.84 ± 15.81 vs 6.35 ± 4.5, P = 0.001) densities than the LE group. The HE group had significantly higher peak extracellular MBP (2.35 ± 0.67 vs 0.45 ± 0.61, P < 0.001) and mean extracellular MBP (1.95 ± 0.76 vs 0.20 ± 0.29, P < 0.0001) densities than the LE group. Seventy-three percent of patients with HE (11/15) had fibrosis, whereas only 10% of patients with LE (1/10) had fibrosis (P < 0.01). MBP performed the best in predicting classification of HE vs LE, with mean MBP demonstrating 100% sensitivity and 95% specificity at the optimal cut point. CONCLUSION: This study provides methodology and proof-of-concept for future evaluation of these biomarkers for differentiating esophageal eosinophilic diseases such as reflux esophagitis and eosinophilic esophagitis.

Vitamin and mineral supplement adherence in pediatric inflammatory bowel disease.

OBJECTIVE: Although vitamin and mineral supplementation for nutritional deficiencies is a common component of pediatric inflammatory bowel disease (IBD) management, little is known about supplement adherence in this group. This study described adherence to multivitamin, iron, and calcium supplements among 49 youth aged 11-18 years with IBD. Additionally, the study examined relationships between supplement knowledge and adherence. METHODS: Participants completed supplement adherence ratings using a validated interview. Knowledge was assessed using an open-ended question from the same interview; responses were later categorized into 1 of 3 knowledge sophistication categories (low, moderate, or high). RESULTS: Mean adherence rates ranged from 32 to 44% across supplements. Youth who did not know the reason for supplementation (approximately 25% of the sample) displayed substantially poorer adherence than did those with moderate or high levels of knowledge, across all supplements. CONCLUSIONS: Findings highlight the importance of evaluating and addressing nonadherence to vitamin and mineral supplements in youth with pediatric IBD.

Abdominal pain and health related quality of life in pediatric inflammatory bowel disease.

OBJECTIVE: To summarize rates of abdominal pain in pediatric inflammatory bowel disease, and to examine associations of abdominal pain, disease activity, and health-related quality of life (HRQoL). METHODS: 44 youths aged 11-18 years completed ratings of abdominal pain, whereas youths and mothers provided ratings of HRQoL at Time 1 (T1) and Time 2 (T2; 6 months later). Disease activity was rated by physicians at T1. RESULTS: At T1, 55% of participants reported pain in the past week, with most in clinical remission. Approximately one-third reported abdominal pain at neither (absent), either (transient), or both (chronic) T1 and T2, respectively. T1 abdominal pain did not contribute significant variance to T1 HRQoL beyond disease activity. However, pain group uniquely predicted T2 HRQoL, with chronic abdominal pain associated with lower HRQoL. CONCLUSIONS: Abdominal pain is prevalent in pediatric inflammatory bowel disease, even during clinical remission. Interventions to address abdominal pain also may enhance HRQoL.

Parental illness encouragement behavior among children with functional gastrointestinal disorders: a factor analysis with implications for research and clinical practice.

The objective of the current study was to assess the factor structure of the Illness Behavior Encouragement Scale (IBES) by Walker and Zeman (1992) among children with functional gastrointestinal disorders (FGIDs). Two hundred seventy nine children (63 % female), and 135 primary caregivers (90.8 % mothers), recruited from a large Midwestern children's hospital completed the IBES, a 12-item measure of parental behavior in response to abdominal pain episodes. Findings suggested the IBES possesses two conceptually distinct scales that are invariant across parent self- and child-report, and are consistent with previous factor analysis in a Dutch sample of children with headaches. Different types of parental behaviors exist that naturally cluster and diverge in reliable ways. Future research is warranted to determine if these different types of parental behavior may differentially influence illness outcomes among children with FGIDs.

Sleep problems and functional disability in children with functional gastrointestinal disorders: an examination of the potential mediating effects of physical and emotional symptoms.

BACKGROUND: Sleep disturbances are increasingly recognized as a common problem for children and adolescents with chronic pain conditions, but little is known about the prevalence, type, and impact of sleep problems in pediatric functional gastrointestinal disorders (FGIDs). The objectives of the current study were two-fold: 1) to describe the pattern of sleep disturbances reported in a large sample of children and adolescents with FGIDs; and, 2) to explore the impact of sleep by examining the inter-relationships between sleep disturbance, physical symptoms, emotional problems, and functional disability in this population. METHODS: Over a 3-year period, 283 children aged 8-17 years who were diagnosed with an FGID and a primary caretaker independently completed questionnaires regarding sleep, emotional functioning, physical symptoms, and functional disability during an initial evaluation for chronic abdominal pain at a pediatric tertiary care center. A verbal review of systems also was collected at that time. Descriptive statistics were used to characterize the pattern of sleep disturbances reported, while structural equation modeling (SEM) was employed to test theorized meditational relationships between sleep and functional disability through physical and emotional symptoms. RESULTS: Clinically significant elevations in sleep problems were found in 45% of the sample, with difficulties related to sleep onset and maintenance being most common. No difference was seen by specific FGID or by sex, although adolescents were more likely to have sleep onset issues than younger children. Sleep problems were positively associated with functional disability and physical symptoms fully mediated this relationship. Emotional symptoms, while associated with sleep problems, evidenced no direct link to functional disability. CONCLUSIONS: Sleep problems are common in pediatric FGIDs and are associated with functional disability through their impact on physical symptoms. Treatments targeting sleep are likely to be beneficial in improving physical symptoms and, ultimately, daily function in pediatric FGIDs.

Collaboration with medical professionals in clinical practice: pediatric abdominal pain as a case example.

Pediatric abdominal pain is a common childhood complaint. Available conceptualizations of the condition point toward an interdisciplinary approach to care as having the highest utility. The current study sets out to describe practice patterns among psychologists treating pediatric abdominal pain, the degree to which such practitioners engage in collaborative behaviors, barriers they experience to collaboration, and their overall satisfaction with their collaborative efforts. A survey of American Psychological Association members revealed that psychologists are engaging in the treatment of pediatric abdominal pain in high numbers and that those practitioners who find ways to engage in collaboration consistent with an interdisciplinary approach are more satisfied with their collaborations. The majority of barriers to collaboration appeared due to inflexibility in the health care system rather than a dispositional barrier on the part of a physician, patient, or the psychologist. Psychologists practicing in medical settings receive some relief from the systemic barriers experienced by psychologists in other settings.

Integrative treatment approaches: family satisfaction with a multidisciplinary paediatric Abdominal Pain Clinic.

OBJECTIVES: To assess patient and family satisfaction with evaluation received through a multidisciplinary paediatric Abdominal Pain Clinic (APC) staffed by a paediatric gastroenterologist and a paediatric psychologist as compared to a traditional gastroenterology clinic (GI) staffed by a paediatric gastroenterologist only. METHODS: Two hundred and ninety-eight families (145 APC, 153 GI) with a child or adolescent aged 8-17 years seen for initial evaluation of a chronic abdominal pain completed an anonymous survey to assess understanding of the treatment recommendations made, intent to follow through with various treatment recommendations, and the overall level of satisfaction with the evaluation service provided. Family perceptions of strengths and challenges of the APC evaluation process also were explored. RESULTS: APC families reported being prescribed adjunctive mental health and other therapies at significantly higher rates than GI families, while the rates of medication were comparable. APC families also reported significantly greater receptivity to beginning the treatments prescribed and higher levels of overall satisfaction with the evaluation process. The contribution of integrated medical and psychological perspectives frequently was identified as a strength of the APC evaluation process. Challenges identified for the APC evaluation were few and focused on issues related to paperwork and scheduling issues. CONCLUSIONS: Integrative care approaches to the evaluation of paediatric abdominal pain appear well accepted by families, yielding high levels of satisfaction, and enhance receptivity to treatment recommendations. Integrative care starting at the time of first evaluation may be particularly well-tailored to enhance outcomes, reduce health care utilization, and yield financial savings within this population.

Variations in psychological profile among children with recurrent abdominal pain.

This study was designed to determine whether distinct subgroups of children with recurrent abdominal pain (RAP) could be identified based on patterns of psychological functioning. Two hundred and eighty-three children (ages 8-17 years), and a primary caretaker, completed the Behavior Assessment System for Children (BASC) during the initial evaluation of RAP at a pediatric gastroenterology clinic. Cluster analysis of BASC scores supported a 3-cluster solution, with fair agreement observed between parents and children on cluster assignment. Approximately half of the sample identified no significant psychological problems. A small percentage (13%) evidenced intense and broad-based psychological problems, while the remainder (35-45%) indicated relative elevations in anxiety only. Cluster membership did not vary systematically by age, gender, race, or functional gastrointestinal disorder diagnosis. Distinct psychological profiles appear to exist for children with RAP. Targeting treatments to these profiles may improve the effectiveness and efficiency with which health professionals address pediatric abdominal pain.

Diagnostic utility of the water load test in children with chronic abdominal pain.

OBJECTIVES: To compare water load test consumption patterns between children with functional gastrointestinal disorders and healthy control children. METHODS: Seventy-one children with recurrent abdominal pain completed the Behavioral Assessment Scale for Children-Self-Report Form and the Questionnaire on Pediatric Gastrointestinal Symptoms during their first visit to a pediatric gastroenterology clinic. Parent- and child-report functional gastrointestinal diagnoses were based on the Questionnaire on Pediatric Gastrointestinal Symptoms scoring criteria, whereas the clinician's diagnosis was based on clinical impression from history and physical examination completed at this visit. Twenty-six healthy children also participated as controls. Statistical comparisons involved Student t tests, whereas receiver operating characteristic curves estimated sensitivity/specificity of the water load test and linear regression determined the amount of variance accounted for in water volume consumption. RESULTS: Children with recurrent abdominal pain, particularly those with a diagnosis of functional dyspepsia, consumed less water than healthy children on the water load test. The water load test demonstrated good specificity, but poor sensitivity, in identifying patients with functional dyspepsia. Clinician evaluation provided the greatest differentiation between functional gastrointestinal disorders on the water load test. CONCLUSIONS: The water load test seems to be a poor diagnostic test for functional dyspepsia because of poor sensitivity. However, future research should examine whether the water load test is identifying a subset of children with functional dyspepsia experiencing a specific mechanosensory dysfunction and whether the water load test can predict clinical response to specific therapeutic interventions.

Chronic abdominal pain in children: an update.

Despite the fact that chronic abdominal pain is a common complaint in children and adolescents, the complexity of this condition only recently has begun to be understood. This article summarizes new advances in the diagnosis, conceptualization, and treatment of chronic abdominal pain. Implications for effective assessment and treatment within the pediatric primary care setting are discussed.

Diagnosing functional abdominal pain with the Rome II criteria: parent, child, and clinician agreement.

OBJECTIVES: To compare the Rome II diagnoses made in children with recurrent abdominal pain by physicians and by parent and child responses on the Questionnaire on Pediatric Gastrointestinal Symptoms. Rates of diagnostic agreement and reasons for disagreement were examined to determine whether changes to the Rome II criteria are needed to improve diagnostic classification. METHODS: One hundred and forty-eight children and their parents or guardians completed the Questionnaire on Pediatric Gastrointestinal Symptoms during their first visit to a pediatric gastroenterology clinic. Parent- and child-report Rome II diagnoses were based on Questionnaire on Pediatric Gastrointestinal Symptoms scoring criteria, whereas the physician's Rome II diagnosis was based on clinical impression from history and physical examination completed at this visit. Statistical comparisons involved Pearson chi tests and Fisher exact tests. Kappa and weighted kappa measured agreement rates. RESULTS: Most children met the criteria for a functional gastrointestinal disorder based on the Rome II criteria. Functional dyspepsia was the most common diagnosis made by all three sources. The percentage of children classified as "no diagnosis" was small and was often a function of symptom duration (especially when diagnosis rested on the child self-report). Diagnostic agreement was fair to moderate. Diagnoses based on parent and child questionnaires agreed more often on functional dyspepsia than irritable bowel syndrome. Diagnostic disagreement was most likely to result from parent and child disagreement on defecation symptoms. CONCLUSIONS: The Rome II classification system shows promise for improving diagnosis, study and treatment of children with recurrent abdominal pain. However, further refinement and clarification of the Rome II criteria for symptom duration and frequency may be needed to improve diagnostic agreement.

Collecting and managing multisource and multimethod data in studies of pediatric populations.

OBJECTIVE: To provide recommendations for the collection and management of multisource and multimethod data in studies of children and adolescents with pediatric conditions. METHODS: We discuss limitations of single-source and single-method data collection strategies. We review strategies for collecting and managing multisource and multimethod data, including coverage of the literature on level of agreement across sources, strengths and weaknesses of various source and method aggregation strategies, and methods of examining discrepancies between sources. RESULTS: Multisource and multimethod data collection strategies enable researchers to rule out alternative explanations for their findings and pose research questions that would probably not be testable with single-source, single-method data sets. CONCLUSIONS: We emphasize the utility of multisource and multimethod data and provide recommendations for future work.