Multidisciplinary Perspectives on Medical Decision-Making for Ostomy Surgery in Pediatric IBD: Themes from Focus Groups.

Pediatric Inflammatory Bowel Disease (IBD) is a chronic illness where patients may undergo ostomy surgery. Medical decision-making (MDM) for ostomy surgery is complex for patients/families and multidisciplinary healthcare professionals (HCPs) alike, with current uncertainty about how multidisciplinary HCPs think about ostomy care to inform future interventions to facilitate equitable multidisciplinary care for patients. This study sought to understand pediatric IBD multidisciplinary HCPs' perceptions regarding ostomy-related MDM and education. Multidisciplinary HCPs (e.g., gastroenterology medical providers, social workers, surgeons, and ostomy nurses) participated in semi-structured focus groups. Focus group data underwent qualitative analysis to identify themes. Three multidisciplinary focus groups were conducted, with n = 12 participants across all groups. Qualitative analysis identified three main themes, including (1) HCP perceptions of ostomies, (2) Patient/family-related factors, and (3) Professional roles and collaboration challenges. Ostomy surgery in pediatric IBD requires complex multidisciplinary MDM and education. Perspectives of multidisciplinary HCPs identified patient, HCP, and systems factors that may impact MDM for ostomy surgery. This work highlights nuances in MDM and education in IBD, and the critical role of ongoing research and improved standardized processes to coordinate multidisciplinary ostomy-related MDM and education in this population.

Practice Survey: Depression Screening in Pediatric Inflammatory Bowel Disease.

BACKGROUND: Little is known about depression screening practices in pediatric inflammatory bowel disease (IBD) care. This study summarizes depression screening within IBD centers in the ImproveCareNow Collaborative Network. METHODS: Pediatric IBD providers across 79 IBD centers completed an online survey on current practices surrounding depression screening. RESULTS: Half of centers report doing annual depression screening, largely for patients 12-14 years. The Patient Health Questionnaire (PHQ-9) is most often used. For positive depression screens, most centers refer for evidence-based psychotherapy and/or a psychosocial provider meets with the patient during that visit. Suicidal ideation is addressed by calling a psychosocial provider to clinic or sending a patient to the emergency department. Barriers to routine screening include lack of personnel/resources, billing, and lack of clinic time. CONCLUSIONS: Pediatric IBD centers conducting depression screening provide targeted intervention based on screening and include psychosocial providers in the process. Greater understanding of screening efforts can inform future clinical efforts.

Transition to Adult IBD Care: A Pilot Multi-Site, Telehealth Hybrid Intervention.

OBJECTIVE: Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. DESIGN AND METHODS: Adolescents and young adults (AYAs; 16-20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. RESULTS: The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p's < .05; d's = 0.76-1.68). CONCLUSIONS: This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.

Depression Screening in Pediatric Inflammatory Bowel Disease Clinics: Recommendations and a Toolkit for Implementation.

OBJECTIVE: Rates of youth depression are increasing, and approximately 75% of adolescents with depression go unrecognized. Research in pediatric IBD documents increased depression risk, with rates up to 25%, as well as worse adherence and treatment outcomes associated with depressive symptoms. Evidence-based psychological interventions improve the physical and emotional health of these patients, highlighting the importance of detection and treatment. Psychosocial screening has been shown to increase the accurate identification of psychosocial problems and facilitate timely psychosocial intervention. The objective of this article is to establish clinical guidelines for depression screening in youth diagnosed with IBD and to provide resources for implementation. METHODS: The psychosocial screening task force group constituted of psychologists and social workers in the ImproveCareNow (ICN) learning health system reviewed research and clinical guidelines in other fields, and consulted with physicians, nurses, other psychosocial professionals, patients with IBD, and parents of children with IBD in ICN. RESULTS/CONCLUSIONS: It is recommended that adolescents with IBD ages 12 and older be screened for depression annually. Additional practical recommendations for implementation, triage, and treatment within the pediatric gastroenterology clinic are also provided.

Focus groups for developing a peer mentoring program to improve self-management in pediatric inflammatory bowel disease.

OBJECTIVES: Inflammatory bowel disease (IBD) presents challenges for self-management in many areas. A peer mentoring program may offer advantages over other forms of self-management interventions because youth may be more receptive to learning self-management skills from a peer than from a parent or professional. The purpose of the present study was to identify themes from focus groups to inform development of a peer mentoring program for improving self-management in pediatric IBD. METHODS: Focus groups were conducted for youth ages 12 to 17, stratified by age (3 groups; n = 14), young adults ages 18 to 20 (1 group; n = 5), and parents of the youth (3 groups; n = 17). Broad questions covered program goals, general program characteristics, mentor/mentee characteristics, and family involvement, and transcriptions were analyzed via directed content analysis, with the a priori codes specified as the broad questions above. RESULTS: Participants identified the primary goals of a program as support, role model, information/education, and fun. They described a program that would include a year-long, 1-on-1 mentor relationship with a peer who has had IBD for at least a year, educational group activities, fun activities that are not focused on IBD, expectations for in-person contact 1 to 2 times per month, and mentor-to-mentor and parent support. CONCLUSIONS: Many of the suggestions from the focus groups correspond with research findings associated with successful mentoring programs. Using participants' suggestions and empirically based best practices for mentoring may result in an effective peer mentoring program for improving self-management in youth with IBD.

Is it "all in the bag?" Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network.

Objectives: Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy-related medical decision-making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States. Methods: This cross-sectional REDCap survey recruited HCPs in pediatric IBD HCP roles from the ImproveCareNow (ICN) Learning Health System. The survey gathered data on, (1) demographics, (2) participants' perspectives on patients/families' ostomy perceptions, (3) participants' own perspectives on ostomies, and (4) participants' perspectives on multidisciplinary collaboration in ostomy surgery. Results: Participants (n = 69, across n = 30 American ICN sites) were 84% White, 62% female, and 54% gastroenterologists. In reflecting on patients/families' perceptions, participants endorsed most (86%) view ostomies as a "failure," various psychosocial concerns (e.g., 97% endorsed body image concerns), and most (81%) have moderate to significant stigma about ostomies. In reflecting on their own perceptions, nearly half (44%) endorsed some to moderate stigma about ostomies and felt ostomy discussions were difficult when families had negative perceptions (88%). Over half (54%) endorsed currently having multidisciplinary care for pediatric IBD surgery. Most (70%) endorsed variability in the amount and/or quality of multidisciplinary collaboration. Conclusion: MDM related to pediatric IBD ostomy surgery presents nuanced clinical complexities for HCPs. This work underscores interest in multidisciplinary care, notable ostomy-related psychosocial needs, and ostomy-related stigma. Future work should develop systematic approaches to multidisciplinary pediatric IBD ostomy care, bolster psychosocial support, and evaluate how systematic care may impact psychosocial, and healthcare utilization outcomes.

Psychosocial issues in pediatric inflammatory bowel disease: report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

Pediatric inflammatory bowel disease (IBD) can affect many areas of psychosocial functioning, and comprehensive medical care includes consideration of psychosocial issues as well as disease factors. The purpose of this clinical report is to review research on psychosocial functioning in pediatric IBD and to provide recommendations for care providers in the areas of psychopathology, health-related quality of life, and social, family, and school functioning. Youth with IBD are at increased risk for difficulty in all areas reviewed, and many psychosocial factors are associated with disease activity, which highlights the importance of monitoring psychosocial functioning as part of clinical care. Several interventions have empirical support or show promise for addressing psychosocial difficulty, and recommendations for monitoring and treating these issues are provided.

Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

This clinical report aims to review key self-management and adherence issues in pediatric inflammatory bowel disease (IBD) and to provide recommendations for health care providers regarding evidence-based assessment and treatment approaches to promote optimal self-management. Self-management difficulties in the form of nonadherence to treatment regimens are common in pediatric IBD and are influenced by various disease-related, individual, family, and health professional relationship factors. To promote adaptive self-management, health care providers are encouraged to adopt a long-term preventive orientation, which includes routine screening of barriers to self-management and nonadherence in the context of routine clinic appointments. The use of a multimethod approach to assessment that incorporates objective measures (eg, pill counts or bioassays) may be particularly advantageous. Individualized treatment approaches that incorporate evidence-based practices, such as providing written treatment plans and offering opportunities to practice and receive feedback on skills, may help to ameliorate minor self-management concerns; however, more severe or chronic self-management problems may require a referral for behavioral health intervention. Additional research to broaden our understanding of self-management in domains beyond medication adherence and to evaluate the effect of clinic-based interventions is imperative.

Patient, Parent, and Provider Perceptions of Barriers to Pediatric Inflammatory Bowel Disease Care.

Objectives: Children with inflammatory bowel disease (IBD) have a significant life-long burden as a result of disease, impacted by environmental and individual barriers. Successful health system interventions require a comprehensive approach, informed by various stakeholders. The main objective was to identify health system barriers and potential solutions from existing patients, families, and providers via focus groups. Methods: Participants for the focus groups were existing English-speaking patients (ages 9-18) with IBD, their caregiver(s), and providers including multiple professions (eg, physician, nurse, pediatrician, social worker, care coordinator, scheduler, and psychologist). Separate focus groups were led by experienced personnel for parents, children, and providers, using a standardized interview guide. Sessions were recorded, transcribed, and verified. Using content analysis, we systematically classified data through coding and identified themes. Results: Focus groups comprised (a) 3 patient groups (n = 20, 50% female, including 2 younger; mean age = 11.4 ± 1.5 years) and 1 older group (mean age = 15.6 ± 1.3 years), (b) 3 parent groups (n = 24, 83% female), and (c) 2 multidisciplinary provider groups (n = 19). Families shared several common concerns with providers (eg, school, care delay, psychosocial, and financial) but varied on specifics. Some barriers may be addressable through family or staff education, improved communication (eg, care delay/ access, transition), or training (eg, labs and diet), while others may require change at an institutional or policy level (eg, insurance). Conclusions: This qualitative analysis identified several barriers to IBD care, some shared, some unique to patients, parents, and providers, highlighting the importance of obtaining multiple stakeholder perspectives when exploring barriers to care.

Pediatric GI Health Care Professionals' Perceptions of and Engagement With Psychosocial Providers in Pediatric IBD Care.

Multidisciplinary care is recommended for optimal pediatric inflammatory bowel disease (IBD) care, including psychosocial providers (eg, psychologists). However, health care professionals' (HCPs) perceptions of and engagement with psychosocial providers in pediatric IBD is lacking. Methods: Cross-sectional REDCap surveys were completed by HCPs (eg, gastroenterologists) across American ImproveCareNow (ICN) centers. Demographics and self-reported perceptions of and engagement with psychosocial providers were collected. Data were analyzed at participant and site levels through descriptives, frequencies, an independent t test, and exploratory analyses of variance. Results: A total of 101 participants from 52% of ICN sites participated. Participants were 88% gastrointestinal physicians, 49% identifying as female, 94% non-Hispanic, and 76% Caucasian. Of ICN sites, 75% and 94% of sites reported outpatient and inpatient psychosocial care, respectively. Participants referred for various clinical reasons to psychosocial providers (eg, illness adjustment). At the participant level, 92% of HCPs reported psychosocial care was very important and 64% reported their clinical thresholds shifted to engage psychosocial providers earlier in care. Barriers to psychosocial care included limited psychosocial providers (92%), psychosocial providers availability (87%), and IBD patients' lack of openness to psychosocial care (85%). One-way analyses of variance by HCP length of experiences were not statistically significant on perceived understanding of psychosocial providers or perceived changes in clinical threshold over time. Conclusion: HCPs overall reported positive perceptions of and frequent engagement with psychosocial providers in pediatric IBD. Limited psychosocial providers and other notable barriers are discussed. Future work should continue interprofessional education of HCPs and trainees and efforts to improve access to psychosocial care in pediatric IBD.

Gender differences in the social functioning of adolescents with inflammatory bowel disease.

Inflammatory bowel disease (IBD) has been associated with social difficulties. Boys with IBD may have increased risk for social problems due to delayed growth and puberty, but gender differences in social functioning have not been investigated. This study examined gender differences in multiple areas of social functioning for adolescents with IBD compared to healthy adolescents. Participants were 92 adolescents 11-17 years (50 with IBD, 42 healthy) and parents who completed questionnaires assessing social functioning. IBD was associated with poorer social functioning in the areas of social competence and social problems. Boys with IBD had worse social competence, with no gender differences for social problems. Gender predicted the use of social contact as a coping strategy, but no significant group differences were found for other areas of social functioning. Adolescents with IBD experience significant social difficulties in some areas, and boys are at risk for poor social competence. However, previously reported social difficulties may not extend to all areas of social functioning.

A single-center experience with methotrexate after thiopurine therapy in pediatric Crohn disease.

BACKGROUND AND AIM: Thiopurines are a common, effective means of maintaining remission in pediatric Crohn disease (CD). Methotrexate (MTX) may be considered for those intolerant of or unresponsive to thiopurines. The purpose of this study was to examine the effectiveness of MTX as maintenance therapy in patients previously treated with thiopurines. PATIENTS AND METHODS: All of the patients at Nationwide Children's Hospital from 1998 to 2007 with an International Classification of Diseases code indicative of CD were identified. Patients with a diagnosis of CD, a history of prior thiopurine use, no current infliximab therapy, and at least 6 months of follow-up after MTX initiation were included. The primary outcome was defined as steroid-/infliximab-free remission determined by the physician global assessment at 6 and 12 months. Secondary outcomes included subsequent treatment with infliximab and/or corticosteroids, rate of discontinuation of MTX, and adverse events (AEs). RESULTS: Twenty-seven patients (17 boys, 63%) with a mean age at diagnosis of 12.3 ± 0.7 years and mean disease duration of 1.49 ± 0.3 years were identified. Indications for MTX included nonresponse to thiopurines, AE, and poor adherence to thiopurines. At 6 and 12 months, 13 of 27 patients (48.1%) and 9 of 27 patients (33.3%), respectively, were in steroid-/infliximab-free remission. A total of 10 patients (37.0%) required infliximab therapy during the 12-month period and 5 patients discontinued MTX. Nausea was the most commonly reported AE. Transient transaminase elevation occurred in 4 patients and transient leukopenia in 2 patients. CONCLUSIONS: MTX can be effective as maintenance therapy for patients with pediatric CD previously intolerant of or unresponsive to thiopurines; however, greater than one third of this cohort required escalation to antitumor necrosis factor therapy within 12 months following MTX initiation. MTX was well tolerated.

A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease.

OBJECTIVE: To conduct a meta-analytic review of psychosocial adjustment of youth with inflammatory bowel disease (IBD). METHODS: Nineteen studies with a total of 1167 youth with IBD (M age = 14.33, 50% female) were included. Effect size (ES) estimates were calculated for anxiety symptoms & disorders, depressive symptoms & disorders, internalizing symptoms & disorders, externalizing symptoms, quality of life (QOL), social functioning, and self-esteem. Separate ESs were calculated for comparisons between IBD and youth with chronic illnesses versus healthy youth. RESULTS: Youth with IBD had higher rates of depressive disorders and internalizing disorders than youth with other chronic conditions. Youth with IBD had higher parent-reported internalizing symptoms, lower parent- and youth-reported QOL, and lower youth-reported social functioning compared to healthy youth. CONCLUSIONS: Clinical attention to depressive disorders, QOL, and social functioning may be particularly salient in the context of pediatric IBD.

Fecal microbiota and metabolites are distinct in a pilot study of pediatric Crohn's disease patients with higher levels of perceived stress.

Stress is associated with increased Crohn's Disease (CD) activity. This pilot study tested whether pediatric patients with CD reporting higher levels of perceived stress exhibited differences in the fecal microbiome and metabolome. The perceived stress scale (PSS) questionnaire was administered within 2 days of collecting a stool sample for microbiome (using 16S rRNA gene sequencing) and metabolome (using NMR metabolomics) analyses. Higher levels of perceived stress were correlated with increased disease activity on the short Pediatric Crohn's Disease Activity Index (sPCDAI). Patients with High PSS scores vs. Low PSS scores based on a median split had significantly lower relative abundances of Firmicutes and Anaerostipes, as well as higher relative abundances of Parabacteroides. Fecal alanine and nicotinate were also significantly different in patients with High vs. Low PSS Scores. This pilot study suggests that the fecal microbiome and metabolome differs in pediatric patients with CD and high perceived stress.

Treatment regimen adherence in pediatric gastroenterology.

OBJECTIVE: To review and critically evaluate the extant research pertaining to adherence in pediatric gastroenterological diseases, particularly inflammatory bowel disease and celiac disease, and to provide recommendations for future research development. MATERIALS AND METHODS: A literature search with no date restriction was conducted using PubMed and PsychInfo electronic databases and bibliographies of relevant articles. RESULTS: Adherence rates in inflammatory bowel disease and celiac disease range considerably from 16% to 62% and 5% to 70%, respectively, across treatments and assessment method; nonadherence frequency was generally not reported. Measures used to assess adherence included self-report, interview, diet record, and bioassay methods, and each measure demonstrated strengths and limitations. Limited evidence suggests that adherence in both disease populations is related to patient and family behavioral factors and that nonadherence is related to poor disease outcome. Treatment outcome research for nonadherence is scant in the current literature. CONCLUSIONS: Future research should focus on refining assessment method, examining adherence and concomitant behavioral factors longitudinally, testing theoretical models of adherence, and developing efficacious treatments for nonadherence.

Anxiety and pain symptoms in children with inflammatory bowel disease and functional gastrointestinal disorders undergoing colonoscopy.

OBJECTIVE: To compare pain and anxiety scores between children with inflammatory bowel disease (IBD) and those with functional gastrointestinal disorders (FGID) undergoing colonoscopy and to examine the role of anxiety and procedure length in predicting reports of pain. MATERIALS AND METHODS: Children ages 10 to 18 years undergoing colonoscopy (general anesthesia) for the first time completed pain and anxiety questionnaires immediately before the procedure and a pain questionnaire 48 hours after colonoscopy. The diagnosis was determined by chart review and physician interview. RESULTS: Children with FGID had a longer duration of pain than those with IBD. Children with FGID endorsed a greater total number of the pain descriptors. The FGID group reported higher usual pain severity and greater postprocedural pain. No differences in anxiety were reported. However, higher levels of anxiety were associated with higher pain scores at the time of colonoscopy in children with IBD. It required significantly more time to perform colonoscopy in the IBD group than in the FGID group. Longer procedure duration was positively correlated with pain in children with FGID but not in children with IBD. CONCLUSIONS: Children with FGID report more usual pain symptoms and may describe more pain after a colonoscopy when compared with children with IBD. Anxiety appears to play a role in pain severity after colonoscopy in children presenting with IBD, but not in children with FGID.

Psychosocial functioning in pediatric inflammatory bowel disease.

BACKGROUND: The purpose of this article is to review research on psychosocial functioning in pediatric inflammatory bowel disease (IBD) and to provide recommendations for future research. METHODS: A literature search was conducted using the MEDLINE and PsychInfo computerized databases and bibliographies of relevant articles. RESULTS: Compared with healthy children, children with IBD are at greater risk of difficulties behavioral/emotional functioning, particularly depression and anxiety, social functioning, and self-esteem. Conflicting results have been reported for the areas of family dysfunction and body image, and few studies have been published in the areas of stress and coping and eating problems. Psychosocial difficulties are clinically significant in only a subset of those with IBD and are generally similar to those found in other pediatric chronic illnesses. CONCLUSIONS: The scant existing research limits conclusions about which children are most likely to experience problems. Future research should investigate a range of psychosocial outcomes, including developmentally appropriate outcomes for adolescents, and risk factors for developing problems. Prevention and intervention strategies aimed at improving psychosocial functioning in children with IBD should be developed and evaluated.

Oral medication adherence in pediatric inflammatory bowel disease.

The purpose of this study was to examine reports of adherence to oral medications, parent-child concordance in reports of adherence, and factors associated with poor adherence in adolescents with inflammatory bowel disease (IBD). Participants were 50 children with IBD 11 to 17 years of age and their parents. Parents completed an adherence interview and the Child Behavior Checklist, Family Assessment Device, and demographics questionnaires. Separately, adolescents completed the adherence interview and the Piers Harris Self-Concept Scale, Children's Depression Inventory, and Coping Strategies Inventory questionnaires. The treating gastroenterologists of participating children completed the Pediatric Crohn's Disease Activity Index during a clinic visit within a week of completion of the questionnaires. Mean parent- and child-reported adherence scores fell between the "most of the time" and "always" categories, although perfect adherence was low. Among IBD-specific medications (5-ASAs, immunomodulators, steroids), 48% of children and 38% of parents reported being always adherent to all medications. Parent-child concordance was high. Family dysfunction and poor child coping strategies were associated with worse adherence. The correlation between more behavioral/emotional problems and lower adherence approached significance. Adherence should be monitored in families that lack appropriate child discipline and in children who cope by simply wishing stressors would go away. Because these issues are associated with poor adherence, it has been suggested that psychotherapy addressing these areas may contribute to improved adherence.