Using social media for patient care, research, and professional development: A North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition position paper.

The advent of social media has changed numerous aspects of modern life, with users developing and maintaining personal and professional relationships, following and sharing breaking news and importantly, searching for and disseminating health information and medical research. In the present paper, we reviewed available literature to outline the potential uses, pitfalls and impacts of social media for providers, scientists and institutions involved in digestive health in the domains of patient care, research and professional development. We recommend that these groups become more active participants on social media platforms to combat misinformation, advocate for patients, and curate and disseminate valuable research and educational materials. We also recommend that societies such as NASPGHAN assist its members in accessing training on effective social media use and the creation and maintenance of public-facing profiles and that academic institutions incorporate substantive social media contributions into academic promotion processes.

Clinical Hypnosis for Pediatric Gastrointestinal Disorders: A Practical Guide for Clinicians.

Functional abdominal pain disorders (FAPDs) are common in the pediatric population and are associated with a significant reduction in quality of life. Bidirectional communication of the brain-gut axis plays an important role in pain generation and perception in FAPDs. There is a paucity of data on the best approach to treat this group of disorders, with no Food and Drug Administration (FDA)-approved drugs and scarce research to substantiate the use of most medications. Use of hypnosis in pediatric FAPDs is supported by evidence and has long-term benefits of up to at least 5 years beyond completion of treatment, highlighting the importance of incorporating this therapy into the care of these patients. The mechanisms by which clinical hypnosis is beneficial in the treatment of FAPDs is not completely understood, but there is growing evidence that it impacts functioning of the brain-gut axis, potentially through influence on central pain processing, visceral sensitivity, and motility. The lack of side effects or potential for significant harm and low cost makes it an attractive option compared to pharmacologic therapies. This review addresses current barriers to clinical hypnosis including misconceptions among patients and families, lack of trained clinicians, and questions around insurance reimbursement. The recent use of telemedicine and delivery of hypnosis via audio-visual modalities allow more patients to benefit from this treatment. As the evidence base for hypnosis grows, acceptance and training will likely increase as well. Further research is needed to understand how hypnosis works and to develop tools that predict who is most likely to respond to hypnosis. Studies on cost-effectiveness in comparing hypnosis to other therapies for FAPDs will increase evidence for appropriate healthcare utilization. Because hypnosis has applications beyond pain and is child-friendly with minimal to no risk, hypnosis could be an important therapeutic tool in the wider pediatric gastrointestinal population.

Exploring the Relationship Between Self-Isolation and Distress Among People with Gastrointestinal Disorders During the COVID-19 Pandemic.

This study aimed to explore the association between perceived isolation and symptoms of distress in people with GI disorders at the time of the pandemic; and to examine factors which moderate this relationship. This online cross-sectional survey was advertised in May-September 2020 via patient organisations and associated social media. Overall, 831 people (82% female, mean age 49 years) from 27 countries participated. A significant relationship between social isolation and psychological distress was noted (r = .525, p < .001). GI symptoms moderated the association between isolation and distress (B = .047, t = 2.47, p = .015). Interventions targeting these factors may help to reduce distress in people with GI disorders at the time of major stressors such as the COVID-19 pandemic.

Associations of Abdominal Pain and Psychosocial Distress Measures With Health-Related Quality-of-Life in Pediatric Healthy Controls and Irritable Bowel Syndrome.

BACKGROUND: Children with irritable bowel syndrome (IBS) have lower health-related quality-of-life (HRQOL) than healthy controls (HC). Abdominal pain and psychosocial distress are negatively associated with HRQOL, although their relative effect is unclear. AIM: The aim of this study was to compare the relative associations of abdominal pain and psychosocial distress with HRQOL in HC and IBS. STUDY: Baseline abdominal pain, psychosocial distress, and HRQOL measures were obtained from HC and IBS pediatric clinical trial participants. Regression assessed which measures were most strongly associated with Physical and Psychosocial HRQOL separately by group. Interaction analyses examined group differences in the associations of abdominal pain and psychosocial distress with HRQOL. RESULTS: Eight-five HC and 213 children with IBS participated. Somatization was most strongly associated with Physical HRQOL in HC, and functional disability was most strongly related in IBS. With respect to Psychosocial HRQOL, somatization was most strongly associated for both HC and IBS; depression was also significantly associated in HC. The strength of association between somatization and Physical HRQOL differed between groups; the negative association was less pronounced for IBS than HC. The association between functional disability and both Physical and Psychosocial HRQOL differed significantly between groups; the negative associations were more pronounced for IBS than HC. CONCLUSIONS: Multiple psychosocial distress measures, including somatization, were associated with HRQOL in children with IBS; HRQOL in HC was driven consistently by somatization, to the exclusion of other psychosocial concerns. The associations of somatization and functional disability with HRQOL are distinctly different between HC and IBS. This knowledge supports utilization of psychosocial interventions to improve overall well-being for children with IBS.

The diagnosis of avoidant restrictive food intake disorder in the presence of gastrointestinal disorders: Opportunities to define shared mechanisms of symptom expression.

OBJECTIVE: Individuals with a gastrointestinal (GI) disorder often alter their diet to manage GI symptoms, adding complexity to understanding the diverse motivations contributing to food avoidance/restriction. When a GI disorder is present, the DSM-5 states that Avoidant/Restrictive Food Intake Disorder (ARFID) can be diagnosed only when eating disturbance exceeds that expected. There is limited guidance to make this determination. This study attempts to address this gap by characterizing the presentation of ARFID in adults with and without a self-reported GI disorder. METHOD: Participants were 2,610 adults ages 18-44 who self-identified as "picky eaters." Participants reported on motivations for food avoidance, affective experiences towards food, and perceived impairment. Responses were compared across four groups: GI issues and likely ARFID (L-ARFID/GI), L-ARFID-only, GI-only, and No-ARFID/No-GI. RESULTS: Groups with a GI disorder (L-ARFID/GI, GI-only) reported more fear of aversive consequences of eating than those without a GI disorder, while groups with L-ARFID (L-ARFID, L-ARFID/GI) evidenced significantly greater sensory aversion to food and indifference to food or eating, negative emotional reactions to food and overall disgust sensitivity, and eating related impairment. DISCUSSION: Consideration of the interplay of a GI disorder with ARFID can add precision to case conceptualization. Food avoidance may be attempts to manage fears of aversive consequences that are augmented by a history of GI symptoms, while sensory aversions and negative emotional reactions towards foods may be more elevated in ARFID. These findings emphasize the need to consider an ARFID diagnosis in patients with GI disorders to optimize care.

Evaluation of the TRxANSITION Index-Parent Version for Assessment of Readiness to Transition to Adult Care Among Youth with Chronic Conditions.

PURPOSE: To develop and evaluate a parent-proxy measure of youth HCT readiness: the TRxANSITION Index-Parent Version. DESIGN AND METHODS: We recruited parents (77% female) and youth (ages 12 to 25) to complete transition readiness measures during outpatient clinic visits. The TRxANSITION Index-Parent Version contains two domains: the Parent Knowledge Domain assessing a parent's knowledge of their youth's illness, and the Parent Proxy Domain, which provides a parental perspective regarding a youth's transition readiness skills. We evaluated the TRxANSITION Index - Parent Version for differences between parent and youth reports of HCT readiness, associations between parent's score and youth's characteristics, and item-category, item-sub-index, and sub-index category correlations. RESULTS: Data from 93 parents-youth dyads were analyzed. Parents scored significantly higher than youth in the Parent Knowledge Domain and similarly in the Parent Proxy Domain. Parents of daughters had significantly higher scores in the Parent Knowledge Domain than parents of sons and reported similar scores to Parents of sons in the Parent Proxy Domain. Only the self-management sub-index significantly correlated with youth's age. The sub-index-domain, item-sub-index, and item-domain correlations assessed were generally large in magnitude (r > 0.5). CONCLUSIONS: The TRxANSITION Index-Parent Version shows promise as a means of assessing parent knowledge of a youth's illness and may provide an accurate proxy assessment of a youth HCT readiness skills. PRACTICE IMPLICATIONS: Obtaining parental perspective on a youth's HCT readiness may provide useful clinical information during the transition process.

Fecal Incontinence Diagnosed by the Rome IV Criteria in the United States, Canada, and the United Kingdom.

BACKGROUND & AIMS: The diagnostic criteria for fecal incontinence (FI) were made more restrictive in the Rome IV revision. We aimed to determine the characteristics of FI patients defined by the Rome IV criteria, assess how FI frequency and amount affect quality of life, identify risk factors, and compare prevalence values among countries. METHODS: We performed an internet-based survey of 5931 subjects in the United States, Canada, and the United Kingdom, from September to December 2015. Subjects were stratified by country, sex, and age. Responders answered questions about diagnosis, health care use, and risk factors. We performed multivariate linear regression analysis to identify risk factors for FI. RESULTS: FI was reported by 957 subjects (16.1%) but only 196 (3.3%) fulfilled the Rome IV criteria. Frequency of FI was less than twice a month for 672/957 subjects (70.2%) and duration was less than 6 months for 285/957 subjects (29.8%). Quality of life was significantly impaired in all subjects with FI compared to subjects with fecal continence. The strongest risk factors for FI were diarrhea, urgency to defecate, and abdominal pain. FI was more prevalent in the United States than in the United Kingdom. Between-country differences were due to less diarrhea and urgency in the United Kingdom. CONCLUSIONS: Rome IV FI prevalence is lower than previous estimates because the new criteria exclude many individuals with less frequent or short duration FI. These excluded patients have impaired quality of life. It might be appropriate to make a diagnosis of FI for all patients with FI ≥2 times in 3 months and to provide additional information on frequency, duration, and amount of stool lost to assist clinicians in treatment selection.

A review of psychological treatments for vomiting associated with paediatric functional gastrointestinal disorders.

PURPOSE OF REVIEW: Vomiting can be a primary symptom or associated with various other functional gastrointestinal disorders (FGIDs). The purpose of this review was to discuss the evidence for psychological treatments for vomiting in pediatric FGID. RECENT FINDINGS: Vomiting of functional origin is an increasingly recognized symptom among children and adolescents. It is highly aversive and associated with disability and poor quality of life. Cognitive behavioral therapy, lifestyle modification (especially sleep), diaphragmatic breathing, and hypnosis can be helpful in preventing vomiting episodes and reducing disability. However, no randomized clinical trials have been performed. An evidence base for psychological treatments in children with vomiting of functional origin is highly needed. SUMMARY: Increased evidence is demonstrating value and efficacy of incorporating psychogastroenterology practices into ongoing treatment plans for digestive conditions. Current psychological treatments are focused on prevention of vomiting through stress reduction and lifestyle modification, reduction of disability by limiting avoidance behaviours, as well as counteracting biological factors. However, psychological treatments have not been shown to be helpful during an acute vomiting episode. More research is needed to build an evidence base for psychological treatments in vomiting disorders.

Bloating in Irritable Bowel Syndrome Is Associated with Symptoms Severity, Psychological Factors, and Comorbidities.

BACKGROUND: Bloating is one of the most bothersome symptoms of irritable bowel syndrome (IBS), but its association with other symptoms is not well described. AIMS: We investigated the association between symptoms of abdominal bloating, other IBS symptoms, psychological distress, and comorbid pain conditions. METHODS: We conducted a cross-sectional study on a large cohort of IBS patients with and without symptoms of abdominal bloating and healthy controls. Subjects were assessed for IBS and its subtypes, pain severity, symptoms severity, psychological disturbances, comorbidities, and dietary restrictions of three fluid groups. RESULTS: A total of 484 subjects were investigated. Compared with IBS - B, IBS + B subjects had higher rates of constipation (30% vs. 15%, p = 0.191) and lower rates of diarrhea, (70% vs. 85%, p = 0.191) although these were not statistically significant. Bloating severity correlated with IBS symptoms severity (r = 0.397, p = 0.000), pain severity (r = 0.364, p = 0.000), and both anxiety and somatization scores (r = 0.167, p = 0.015 and r = 0.219, p = 0.001, respectively). Prevalence of fibromyalgia and depression and somatization scores was significantly higher in IBS with bloating than in IBS without bloating. IBS patients with bloating reported more dietary restriction of three fluid groups to control their symptoms compared with healthy controls and IBS patients without bloating. CONCLUSIONS: Abdominal bloating in IBS is associated with increased symptoms and pain severity, somatization, depression, fibromyalgia, and altered dietary fluids composition. Recognizing and addressing these factors in the diagnosis and management of patients with IBS may improve clinical outcome.

Association of youth health care transition readiness to role overload among parents of children with chronic illness.

BACKGROUND: A parent's level of role overload, a situation in which the demands of an individual's roles are beyond their capacity to perform adequately, has been associated with poor outcomes in adolescents. It is unknown if role overload in parents is associated with less health care transition (HCT) readiness in their children with chronic conditions. We sought to assess this relationship. METHODS: Youth with chronic conditions attending a therapeutic camp and their parents completed online consents/assents and de-identified surveys. Parents reported on parental role overload using the Reilly Role Overload Scale and a proxy assessment of the youth's HCT readiness using the STARx -Parent Questionnaire. Youth self-reported on their HCT readiness using the STARx Questionnaire. Linear regression measured the relationship between parent role overload and HCT readiness, controlling for youth's age, sex, and degree of youth's educational support. RESULTS: One hundred fifty-two parents and 50 youth completed the measures. Greater parental role overload was associated with less overall HCT readiness on the parent proxy measure (ß = -.12, P ≤ .008) and a lower level in the self-management domain on the parent proxy measure (ß = -.20, P ≤ .001). We found no associations between parent role overload and youth self-report of HCT readiness. CONCLUSION: Parent's level of role overload had no association with youth's self-report of HCT readiness but was negatively associated with parent proxy report of their youth's HCT readiness, suggesting that parents with high levels of role overload may perceive their youth as less ready to transition to adult-focused care.

Visceral hypersensitivity is associated with GI symptom severity in functional GI disorders: consistent findings from five different patient cohorts.

OBJECTIVE: Our aim was to evaluate the association between visceral hypersensitivity and GI symptom severity in large cohorts of patients with functional GI disorder (FGID) and to adjust for psychological factors and general tendency to report symptoms. DESIGN: We included five cohorts of patients with FGIDs (IBS or functional dyspepsia; n=1144), who had undergone visceral sensitivity testing using balloon distensions (gastric fundus, descending colon or rectum) and completed questionnaires to assess GI symptom severity, non-GI somatic symptoms, anxiety and depression. Subjects were divided into sensitivity tertiles based on pain/discomfort thresholds. GI symptom severity was compared between sensitivity tertiles in each cohort and corrected for somatisation, and anxiety and depression. RESULTS: In all five cohorts, GI symptom severity increased gradually with increasing visceral sensitivity, with significant differences in GI symptom severity between the sensitivity tertiles (p<0.0001), with small to medium effect sizes (partial η2: 0.047-0.11). The differences between sensitivity tertiles remained significant in all cohorts after correction for anxiety and depression, and also after correction for non-GI somatic symptom reporting in all of the cohorts (p<0.05). CONCLUSIONS: A gradual increase in GI symptom severity with increasing GI sensitivity was demonstrated in IBS and functional dyspepsia, which was consistent across several large patient groups from different countries, different methods to assess sensitivity and assessments in different parts of the GI tract. This association was independent of tendency to report symptoms or anxiety/depression comorbidity. These findings confirm that visceral hypersensitivity is a contributor to GI symptom generation in FGIDs.

Prevalence of Pediatric Functional Gastrointestinal Disorders Utilizing the Rome IV Criteria.

OBJECTIVE: To assess the prevalence of functional gastrointestinal (GI) disorders in children 0-18 years old according to the newly established Rome IV diagnostic criteria as reported by parents in a representative community sample. STUDY DESIGN: A cross-sectional study in which mothers (n = 1255) of children aged 0-18 years old in the US were recruited to complete an online survey about their child's GI symptoms, quality of life (QoL), and other health conditions. RESULTS: Based on the Rome IV criteria, 24.7% of infants and toddlers aged 0-3 years and 25.0% of children and adolescents aged 4-18 years fulfilled symptom-based criteria for a functional GI disorder. The most common functional GI disorders were infant regurgitation among infants (24.1%) and functional constipation among both toddlers (18.5%) and children and adolescents (14.1%). QoL was diminished in pediatric patients with functional GI disorders (median = 71.69 vs median = 87.60; z = -11.41; P < .001). Children were more likely to qualify for a functional GI disorder if their parent qualified for a functional GI disorder (35.4% vs 23.0%; P < .001). CONCLUSIONS: Based on Rome IV criteria, functional GI disorders are common in pediatric populations of all ages and are associated with decreased QoL.

Longitudinal Self-Management and/or Transition Readiness per the TRxANSITION Index among Patients with Chronic Conditions in Pediatric or Adult Care Settings.

OBJECTIVE: To evaluate the roles of key individual, family, and illness characteristics on the levels of and gains in longitudinal healthcare transition (HCT) readiness in the pediatric setting and/or self-management skills (SMS) in the adult-focused setting, we used a large dataset with longitudinal measurements from 2006 to 2015. STUDY DESIGN: This longitudinal observational study followed 566 adolescents and young adults with chronic conditions at University of North Carolina Hospitals. TRxANSITION Index measurements, which represent learning outcomes rather than health outcomes, were collected multiple times per patient and analyzed using a novel application of an education-based approach. RESULTS: Levels of and gains in HCT/SMS scores increased with age (P < .001) with smaller increases at older ages. Mastery of skills varied by age with self-management achieved after 20 years of age. Scores varied positively by father's education and negatively by mother's education and duration of diagnosis. Gains in scores further varied positively with private insurance and negatively with mother's education and duration of diagnosis. CONCLUSIONS: We found diminishing positive increases in HCT/SMS scores as patients become older and smaller levels of and gains in readiness among younger patients with more educated mothers. Risk factors for absolute level of HCT/SMS readiness and inadequate longitudinal gains are not always the same, which motivates a deeper understanding of this dynamic process through additional research. This information can guide providers to focus HCT/SMS preparation efforts on skills mastered at particular ages and to identify patients at risk for inadequate development of HCT/SMS skills.

Seasonal Association of Pediatric Functional Abdominal Pain Disorders and Anxiety.

OBJECTIVES: Abdominal pain-related pediatric functional gastrointestinal disorders (AP-FGIDs) are defined by abdominal discomfort or pain that may provide obstacles to everyday activities, such as school attendance. It has been reported that AP-FGID symptoms may be reduced in summer, but it is unclear what drives this seasonal variation. This pilot study aimed to explore whether the seasonal variation in AP-FGID symptoms could be explained by various psychological and behavioral factors. METHODS: Parents of children with AP-FGID symptoms completed online questionnaires on symptoms, anxiety, parental responses to pain, sleep, diet, and physical activity once during spring months and again in the summer months. RESULTS: In a sample of 34 participants who completed both questionnaires, 22 reported improvements during the summer months. These participants reported a significantly higher seasonal decrease in anxiety than participants whose children's symptoms did not improve from spring to summer (mean decrease 2.21 vs 0.08, P = 0.017). Both groups reported equal improvements in sleep and decreased stress from spring to summer. Neither group experienced statistically significant seasonal change in physical activity or fruit, vegetables, dairy, or caffeine consumption. CONCLUSIONS: This study suggests that amelioration of gastrointestinal symptoms in pediatric patients with AP-FGID during summer months is associated with amelioration of anxiety in the same time period. It is not yet clear whether decreased anxiety is the cause or effect of decreased AP-FGID symptoms.

Maladaptive Coping and Depressive Symptoms Partially Explain the Association Between Family Stress and Pain-Related Distress in Youth With IBD.

Objective: To extend existing research on the pain burden experienced by youth with inflammatory bowel disease (IBD) by examining the complexity of psychosocial factors involved in pain-related distress. Methods: Parents completed measures of family stress and their child's pain-related expressions of distress and coping. Youth with IBD rated their depressive symptoms (n = 183 dyads). Mediation analyses were performed using regression-based techniques and bootstrapping. Results: Greater family stress was positively related to children's pain-related expressions of distress and passive coping. Significant indirect effects were found in the relationship between family stress and expressed pain-related distress through parent-reported passive coping, depressive symptoms, and both passive coping and depressive symptoms sequentially. Conclusions: Results suggest that family stress can place children at risk for greater expressed pain-related distress through effects on coping and depressive symptoms. Addressing psychosocial difficulties is important for closing the gap between disability and health in youth with IBD.

A Parental Report of Youth Transition Readiness: The Parent STARx Questionnaire (STARx-P) and Re-evaluation of the STARx Child Report.

PURPOSE: The STARx Questionnaire is a self-report measure of health care transition (HCT) readiness in youth with chronic diseases. We aimed to improve reliability and generalizability of the STARx and report initial reliability data on the STARx-P Questionnaire, a self-report measure of parent perspective on their child's HCT readiness. METHODS: Participants were recruited in several clinics from a large academic hospital in the southeastern USA and via the therapeutic summer camp for children with chronic disease. Children with chronic conditions responded to the 18-question STARx Questionnaire and their parents responded to the parent version, the STARx-P Questionnaire. RESULTS: IRB-approved consents were obtained from 341 parents (89.4% mothers) and 455 children (Mean age 12.28±2.53; 36.9% Males; 68.6% Caucasian; 22.6% African-American). The most common diagnoses were kidney disease, inflammatory bowel disease, diabetes, cerebral palsy, sickle cell, and cystic fibrosis. Principal component analysis of the STARx-P Questionnaire identified three major subscales in both the child and parent-report: Disease Knowledge, Self-management and Provider Communication. Internal reliability was moderate to good (α=0.545-0.759). CONCLUSIONS: The STARx-P Questionnaire and STARx Version 4 Questionnaire have demonstrated initial reliability in this multi-institution study. It is the first HCT readiness questionnaire that includes a parent-proxy report which is needed in studies of non-verbal and/or developmentally delayed children. Parent-report can also give unique insights not obtained from self-reports.

Rome IV Diagnostic Questionnaires and Tables for Investigators and Clinicians.

The Rome IV Diagnostic Questionnaires were developed to screen for functional gastrointestinal disorders (FGIDs), serve as inclusion criteria in clinical trials, and support epidemiological surveys. Separate questionnaires were developed for adults, children/adolescents, and infants/toddlers. For the adult questionnaire, we first surveyed 1,162 adults without gastrointestinal disorders, and recommended the 90th percentile symptom frequency as the threshold for defining what is abnormal. Diagnostic questions were formulated and verified with clinical experts using a recursive process. The diagnostic sensitivity of the questionnaire was tested in 843 patients from 9 gastroenterology clinics, with a focus on clinical diagnoses of irritable bowel syndrome (IBS), functional constipation (FC), and functional dyspepsia (FD). Sensitivity was 62.7% for IBS, 54.7% for FD, and 32.2% for FC. Specificity, assessed in a population sample of 5,931 adults, was 97.1% for IBS, 93.3% for FD, and 93.6% for FC. Excess overlap among IBS, FC, and FD was a major contributor to reduced diagnostic sensitivity, and when overlap of IBS with FC was permitted, sensitivity for FC diagnosis increased to 73.2%. All questions were understandable to at least 90% of individuals, and Rome IV diagnoses were reproducible in ¾ of patients after one month. Validation of the pediatric questionnaires is ongoing.

Psychological Factors May Play an Important Role in Pediatric Crohn's Disease Symptoms and Disability.

OBJECTIVE: To examine the relative contributions of disease activity and psychological factors to self-reported symptoms and disability in children with Crohn's disease. STUDY DESIGN: Participants (n = 127 children age 8-18 years) completed questionnaires on symptom severity and disability, as well as psychological measures assessing anxiety, depression, pain beliefs and coping. Disease activity was measured by the Pediatric Crohn's Disease Activity Index. Structural equation modeling was used to test the effects of disease activity and psychological factors on symptoms and disability. RESULTS: In the hypothesized model predicting symptoms, psychological factors (ß = 0.58; P < .001) were significantly associated with disease symptoms but disease activity was not. The model for disability yielded significant associations for both psychological factors (ß = 0.75; P < .001) and disease activity (ß = 0.61, P < .05). CONCLUSION: Crohn's disease symptoms in children and adolescents are not only driven by disease activity. Coping, anxiety, depression, and cognition of illness are important in the patient-reporting of symptom severity and disability. Physicians need to be aware that symptom self-reporting can be driven by psychological factors and may not always be simply an indicator of disease activity. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00679003.