High Body Mass Index and Response to Anti-Tumor Necrosis Factor Therapy in Pediatric Crohn's Disease.

INTRODUCTION: Obesity is common among patients with pediatric Crohn's disease (PCD). Some adult studies suggest obese patients respond less well to anti-tumor necrosis factor (TNF) treatment. This study sought compares anti-TNF response and anti-TNF levels between pediatric patients with normal and high body mass index (BMI). METHODS: The COMBINE trial compared anti-TNF monotherapy with combination therapy with methotrexate in patients with PCD. In this secondary analysis, a comparison of time-to-treatment failure among patients with normal BMI vs BMI Z -score >1, adjusting for prescribed anti-TNF (infliximab [IFX] or adalimumab [ADA]), trial treatment assignment (combination vs monotherapy), and relevant covariates. Median anti-TNF levels across BMI category was also examined. RESULTS: Of 224 participants (162 IFX initiators and 62 ADA initiators), 111 (81%) had a normal BMI and 43 (19%) had a high BMI. High BMI was associated with treatment failure among ADA initiators (7/10 [70%] vs 12/52 [23%], hazard ratio 0.29, P = 0.007) but not IFX initiators. In addition, ADA-treated patients with a high BMI had lower ADA levels compared with those with normal BMI (median 5.8 vs 12.8 µg/mL, P = 0.02). IFX trough levels did not differ between BMI groups. DISCUSSION: Overweight and obese patients with PCD are more likely to experience ADA treatment failure than those with normal BMI. Higher BMI was associated with lower drug trough levels. Standard ADA dosing may be insufficient for overweight children with PCD. Among IFX initiators, there was no observed difference in clinical outcomes or drug levels, perhaps due to weight-based dosing and/or greater use of proactive drug monitoring.

The contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in pediatric inflammatory bowel disease.

BACKGROUND: Clinical disease activity associated with inflammatory bowel disease (IBD) can place physical limitations on youths' activities of daily living. In turn, functional limitations potentially contribute to youths' heightened experience of IBD-induced intrusions on a wide range of routine and valued activities (i.e., illness intrusiveness), which can increase their risk for depressive symptoms. The present study examined the contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in youth with IBD. METHODS: Youth (N = 180) completed the Functional Disability Inventory (FDI), Illness Intrusiveness Scale-Child (IIS-C), and Children's Depression Inventory-2 (CDI-2). Physicians completed the Physicians Global Assessment of disease activity (PGA). RESULTS: Results revealed a mediating effect for functional disability in the association between disease activity and depressive symptoms (PGA → FDI → CDI-2); illness intrusiveness mediated the association between functional disability and depressive symptoms (i.e., FDI → IIS-C → CDI-2). Serial mediation revealed that clinical disease activity conferred an indirect effect on youth depressive symptoms through the sequential effects of functional disability and illness intrusiveness (i.e., PGA → FDI → IIS-C → CDI-2). CONCLUSIONS: Taken together, these findings indicate that youth who encounter more physical limitations as a function of clinical disease activity are more likely to experience an amplified sense of IBD-related intrusions on their ability to participate in meaningful activities. In turn, heightened illness intrusiveness increases the likelihood of depressive symptoms. Clinical interventions that help youth maintain adequate functional ability in the face of IBD disease activity and encourage involvement in positively valued activities could decrease the negative impact of IBD on youths' emotional adjustment.

Use, Durability, and Risks for Discontinuation of Initial and Subsequent Biologics in a Large Pediatric-Onset IBD Cohort.

BACKGROUND: Biologic medications are recommended for treatment of moderately-to-severely active Crohn disease (CD) or ulcerative colitis (UC) in children. However, many patients require sequential biologic treatment because of nonresponse or loss of response to the initial biologic. METHODS: We analyzed pediatric inflammatory bowel disease (IBD) data from the ImproveCareNow Network registry between May 2006 and September 2016, including time to biologic initiation, choice of first subsequent biologics, biologic durability, and reasons for discontinuation. RESULTS: Of 17,649 patients with IBD [CD: 12,410 (70%); UC: 5239 (30%)], 7585 (43%) were treated with a biologic agent before age 18 (CD: 50%; UC: 25%). Biologic treatment was more likely for CD than UC (odds ratio, 3.0; 95% CI: 2.8-3.2; P < 0.0001). First biologic agents for all patients were anti-tumor necrosis factor agents (88% infliximab, 12% adalimumab). Probability of remaining on the first biologic was significantly higher in CD than UC ( P < 0.0001). First biologics were discontinued because of loss of response (39%), intolerance (23%), and nonresponse (19%). In univariate analysis, factors associated with discontinuation of first and/or second biologics in CD include colonic-only disease, corticosteroid use, upper gastrointestinal tract involvement, and clinical and biochemical markers of severe disease. Biologic durability improved with later induction date. CONCLUSIONS: Treatment with biologic medications is common in pediatric IBD. Patients with CD are more likely to receive biologics, receive biologics earlier in disease course, and remain on the first biologic longer than patients with UC. Multiple factors may predict biologic durability in children with IBD.

The Combined Effects of Youth and Parent Illness Intrusiveness on Depressive Symptoms in Adolescents with Inflammatory Bowel Disease.

Inflammatory bowel disease (IBD) presents physical and emotional challenges for families and imposes significant lifestyle intrusions on both youth and parents. The present study examined the effects of IBD disease activity and youth illness intrusiveness on depressive symptoms in adolescents, and the moderating influence of parent illness intrusiveness on these associations. Adolescents and parents completed measures of illness intrusiveness; youth completed a measure of depressive symptoms. Physicians provided estimates of IBD disease activity. Mediation analysis revealed an IBD disease activity → youth intrusiveness → youth depressive symptoms indirect effect. Moderated mediation analyses revealed this indirect effect to be greater among youth whose parents endorsed more IBD-related intrusions. Youth encountering greater activity disruptions related to IBD are vulnerable to depressive symptoms. When parents also experience IBD-induced intrusions, youth are at even greater risk for depressive symptoms. Clinical implications are discussed within the context of youths' and parents' experiences of IBD.

Illness Stigma, Worry, Intrusiveness, and Depressive Symptoms in Youth With Inflammatory Bowel Disease.

BACKGROUND: Youth who experience IBD-associated stigma may manifest increased worry about aversive symptoms that can intrude on their participation in routine activities (eg, school, social events), potentially resulting in limited opportunities for reinforcement and increased depressive symptoms. The present study examined an IBD stigma → IBD worry → illness intrusiveness → depressive symptoms serial mediation model, in which stigma was hypothesized to confer an indirect effect on youth depressive symptoms through the serial effects of stigma on IBD worry and illness intrusiveness. METHODS: Youth with IBD (N = 90) between the ages of 10 and 18 years were recruited from a pediatric gastroenterology clinic and completed measures of IBD stigma, IBD worry, illness intrusiveness, and depressive symptoms. RESULTS: In addition to several independent direct effects among the modeled variables, results revealed a significant IBD stigma → IBD worry → illness intrusiveness → depressive symptoms serial mediation path (effect = 0.63, 95% CI = 0.22 to 1.20), controlling for youth sex and IBD severity. CONCLUSIONS: The experience of IBD-related stigma may prompt increased worry about IBD symptoms, independent of the influence of disease activity. Further, heightened worry appears to amplify youths' experience of IBD-imposed limitations on routine and rewarding activities, increasing their risk for experiencing depressive symptoms. Our findings highlight the importance of regular screening for depressive symptoms, as well as the identification of potential risk factors associated with emotional adjustment difficulties. Stigma-specific treatment modules could be integrated within existing cognitive-behavioral approaches for reducing worry and depressive symptoms in youth with IBD.

Stigma by Association: Parent Stigma and Youth Adjustment in Inflammatory Bowel Disease.

OBJECTIVE: Examine the indirect association between parents' experience of stigma (i.e., associative stigma) and youth depressive symptoms through the serial effects of associative stigma on parent and youth illness intrusiveness in pediatric inflammatory bowel disease (IBD). METHODS: During routine clinic visits, 150 youth with well-controlled IBD (ages 10-18 years) completed measures of perceived illness intrusiveness and depressive symptoms. Parents completed measures of associative stigma and illness intrusiveness. Pediatric gastroenterologists provided ratings of IBD disease severity. RESULTS: Structural equation modeling revealed significant direct associations for associative stigma → parent illness intrusiveness, parent illness intrusiveness → youth illness intrusiveness, and youth illness intrusiveness → youth depressive symptoms. Results also revealed a significant associative stigma → parent illness intrusiveness → youth illness intrusiveness→ youth depressive symptoms serial mediation path, indicating that parents' experience of associative stigma indirectly influenced youth depressive symptoms through its sequential effects on parent and youth perceived illness intrusiveness. CONCLUSIONS: Parents who face stigma related to their child's IBD (i.e., associative stigma) are more likely to experience IBD-induced lifestyle intrusions (i.e., illness intrusiveness), which in turn is associated with youths' illness intrusiveness and ultimately youth depressive symptoms. These findings provide further evidence for the important role of illness-related stigma in pediatric IBD, particularly the transactional relation between parents' associative stigma and youths' illness appraisals and emotional functioning. The clinical implications of our results for addressing adjustment difficulties in youth with IBD are also discussed.

Stigma Moderates the Relation Between Peer Victimization, Thwarted Belongingness, and Depressive Symptoms in Youth with Inflammatory Bowel Disease.

PURPOSE: The stigmatizing nature of IBD symptoms may place youth at risk for being targets of peer victimization, potentially resulting in a decreased sense of social belongingness and poorer emotional adjustment. The present study tested a series of mediation and moderated mediation models examining the associations among peer victimization, thwarted social belongingness, and depressive symptoms, as well as the moderating role of IBD stigma in these associations. We hypothesized peer victimization would have an indirect effect on youth depressive symptoms through thwarted belongingness, and this effect would be amplified for youth endorsing greater IBD stigma. DESIGN AND METHODS: Seventy-five youth (10-18 yrs.) diagnosed with IBD were recruited from a pediatric gastroenterology clinic. Participants completed self-report measures of IBD stigma, peer victimization, thwarted belongingness, and depressive symptoms. RESULTS: As anticipated, mediation analyses revealed a significant peer victimization → thwarted belongingness → depressive symptoms indirect path. Moderated mediation analyses indicated that this indirect effect was moderated by IBD stigma and was significantly greater among youth reporting higher IBD stigma. CONCLUSIONS: Youth who experience higher levels of IBD-related stigma are at increased risk for depressive symptoms as a function of the socially isolating effects of peer victimization. PRACTICE IMPLICATIONS: Our findings highlight the need for routine screening and identification of the socioemotional challenges faced by youth with IBD. Clinical interventions that incorporate coping strategies aimed at minimizing youths' stigmatizing self-perceptions and improving overall social skills and social engagement may lessen the negative impact of peer victimization on youths' social and emotional adjustment.

The Contributions of Illness Stigma, Health Communication Difficulties, and Thwarted Belongingness to Depressive Symptoms in Youth with Inflammatory Bowel Disease.

OBJECTIVE: Youth with inflammatory bowel disease (IBD) often experience difficulties communicating about their disease. It is suspected that the stigmatizing nature of IBD symptoms contributes to youths' health communication difficulties, leaving youth feeling disconnected from their social environment and potentially resulting in decreased social belongingness and poorer emotional functioning. In this study, we tested an illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms serial mediation model. It was anticipated that youth illness stigma would confer a serial indirect effect on youth depressive symptoms through the sequential effects of stigma on health communication difficulties and thwarted social belongingness. METHODS: Seventy-five youth with IBD between the ages of 10 and 18 completed measures of perceived illness stigma, health communication difficulties, thwarted belongingness, and depressive symptoms. RESULTS: Results indicated a significant illness stigma → thwarted belongingness → depressive symptoms simple mediation path. Importantly, findings also revealed a significant serial mediation path for illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms. CONCLUSIONS: Youth who perceive greater IBD stigma appear to experience increased difficulty communicating about their IBD with others, which in turn is associated with feelings of thwarted social belongingness and ultimately elevated depressive symptoms. These findings suggest that difficulty communicating about IBD is one potential route by which illness stigma has a negative impact on youth adjustment outcomes. Results could also inform clinical interventions to address IBD stigma and health communication difficulties associated with the social and emotional challenges in youth with IBD.

Endoscopic Skipping of the Terminal Ileum in Pediatric Crohn Disease.

OBJECTIVE: Pediatric small-bowel (SB) Crohn disease (CD) may be missed if the terminal ileum (TI) appears normal at endoscopy and SB imaging is not performed. We sought to estimate the prevalence and clinical characteristics of pediatric patients with CD and endoscopic skipping of the TI-that is, pediatric patients with active SB or upper gut inflammation and an endoscopically normal TI. MATERIALS AND METHODS: This retrospective study included pediatric patients with CD who underwent both CT enterography (CTE) or MR enterography (MRE) and ileocolonoscopy within a 30-day period between July 2004 and April 2014. The physician global assessment was used as the reference standard for SB CD activity. Radiologists reviewed the CTE and MRE studies for inflammatory parameters; severity, length, and multifocality of SB inflammation; and the presence of penetrating complications. RESULTS: Of 170 patients who underwent ileal intubation, the TI was macroscopically normal or showed nonspecific inflammation in 73 patients (43%). Nearly half (36/73, 49%) of the patients with normal or nonspecific findings at ileocolonoscopy had radiologically active disease with a median length of SB involvement of 20 cm (range, 1 to > 100 cm). Seventeen (47%) of these patients had multifocal SB involvement and five (14%) had penetrating complications. Overall, endoscopic TI skipping was present in 43 (59%) patients with normal or nonspecific ileocolonoscopic findings: 20 with histologic inflammation (17 with positive imaging findings), 14 with inflammation at imaging only, and nine with proximal disease (upper gut, jejunum, or proximal ileum). There were no significant differences in the clinical parameters of the patients with and those without endoscopic TI skipping. CONCLUSION: Ileocolonoscopy may miss SB CD in pediatric patients that is due to isolated histologic, intramural, or proximal inflammation. Enterography is complementary to ileocolonoscopy in the evaluation of pediatric CD.

Biologic Agents Are Associated with Excessive Weight Gain in Children with Inflammatory Bowel Disease.

BACKGROUND: Children with active inflammatory bowel disease (IBD) are frequently underweight. Anti-tumor necrosis factor (anti-TNF) agents may induce remission and restore growth. However, its use in other autoimmune diseases has been associated with excess weight gain. Our aim was to examine whether children with IBD could experience excess weight gain. METHODS: A centralized diagnostic index identified pediatric IBD patients evaluated at our institution who received anti-TNF therapy for at least 1 year between August 1998 and December 2013. Anthropometric data were collected at time of anti-TNF initiation and annually. Excess weight gain was defined as ΔBMI SDS (standard deviation score) where patients were (1) reclassified from "normal" to "overweight/obese," (2) "overweight" to "obese," or (2) a final BMI SDS >0 and ΔSDS >0.5. RESULTS: During the study period, 268 children received anti-TNF therapy. Of these, 69 had sufficient follow-up for a median of 29.3 months. Median age at first anti-TNF dose was 12.8 years. At baseline, mean weight SDS was -0.7 (SD 1.4), while mean BMI SDS was -0.6 (1.3). Using baseline BMI SDS, 11.6% were overweight/obese. At last follow-up (LFU), however, the mean ΔBMI SDS was 0.50 (p < 0.0001). However, 10 (17%) patients had excess weight gain at LFU; 3 patients were reclassified from "normal" to "obese," and 7 had a final BMI SDS >0 and ΔSDS >0.5. CONCLUSIONS: Pediatric patients with IBD may experience excess weight gain when treated with anti-TNF agents. Monitoring for this side effect is warranted.

Psoriasis and Psoriasiform Eruptions in Pediatric Patients with Inflammatory Bowel Disease Treated with Anti-Tumor Necrosis Factor Alpha Agents.

BACKGROUND: Anti-tumor necrosis factor alpha (TNF-α) agents are used to treat a variety of autoimmune and inflammatory conditions, including psoriasis. Paradoxically, numerous reports have documented new-onset or exacerbation of psoriasis or psoriasiform skin lesions (PSO) in patients treated with these agents for conditions other than PSO-particularly in adults with inflammatory bowel disease (IBD). Not much is known regarding similar cases in children. METHODS: A retrospective chart review was performed on children younger than 19 years of age with IBD seen at the Mayo Clinic between 2003 and 2015 who developed new-onset or recurrent PSO while undergoing anti-TNF-α therapy. RESULTS: Fourteen children developed PSO while undergoing anti-TNF-α therapy for IBD. All three anti-TNF-α agents (infliximab, adalimumab, certolizumab) used to treat IBD in this series led to induction or recurrence of PSO lesions. The median time to development of PSO was 11 months (range 0-48 mos), the median age was 15 years (range 12.5-17.5 yrs), and 57% of patients were male. IBD activity was quiescent in 93% of cases at PSO onset. Seven patients (50%) discontinued their initial anti-TNF-α therapy because of their skin disease. Ultimately, four patients (29%) had to discontinue all anti-TNF-α therapy to induce PSO resolution. CONCLUSION: TNF-α antagonist-induced PSO in children with IBD is a rarely reported adverse reaction. PSO onset has a variable latency, but usually occurs during IBD remission, with a slight male bias. Nearly half of patients required a change in their initial anti-TNF-α agent despite conventional skin-directed therapies, and one-third of patients discontinued all anti-TNF-α therapy because of PSO.

Evaluation of Patient Tolerance and Small-Bowel Distention With a New Small-Bowel Distending Agent for Enterography.

OBJECTIVE: The objective of our study was to compare a flavored beverage containing a thickening agent for enterography with a low-Hounsfield-value barium suspension for side effects, taste, subjects' willingness to repeat the drinking protocol, and small-bowel distention. SUBJECTS AND METHODS: The following five drinking protocols were administered to 10 volunteers: 1000 mL of flavored beverage followed by 350 mL of water, 1500 mL of flavored beverage, 900 mL of low-Hounsfield-value barium suspension followed by 450 mL of water, 1350 mL of low-Hounsfield-value barium suspension followed by 150 mL of water, and 1500 mL of water. MR images were obtained 50 and 60 minutes after initiation of drinking. Subjects completed a questionnaire evaluating the side effects, the taste of the drink, and their willingness to repeat the drinking protocol. Reviewers assigned scores evaluating small-bowel distention and ranked the examinations in order of preference. RESULTS: There was no significant difference in nausea or vomiting among the protocols (p = 0.20 and 0.42, respectively), but larger volumes of flavored beverage and low-Hounsfield-value barium suspension resulted in more cramping and diarrhea (p = 0.001 and 0.002, respectively). The taste of the low-Hounsfield-value barium suspension was rated the worst (p < 0.0001). The subjects' willingness to repeat the drinking protocol was highest for the 1000 mL of flavored beverage or water alone (p < 0.05). There were no significant differences in subjective small-bowel distention except that water was rated the worst by two of the three readers (p < 0.02). There was no significant difference in the diameter of the most dis-tended small bowel for any segment or reader (p > 0.23). CONCLUSION: A flavored beverage containing a thickening agent has a similar side effect profile and results in equivalent small-bowel distention compared with a low-Hounsfield-value barium suspension, but subjects rate taste and their willingness to repeat the drinking protocol higher for this new agent.

Survey of Immunization Practices in Patients With Inflammatory Bowel Disease Among Pediatric Gastroenterologists.

OBJECTIVES: We aimed to determine vaccination practices of pediatric gastroenterologists, as well as barriers to following immunization guidelines in patients with inflammatory bowel disease. METHODS: Institutions listed in the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition clinical research registry and/or ImproveCareNow were contacted. A total of 657 physicians from 129 institutions were asked to complete a 16-question electronic survey. RESULTS: A total of 178 physicians (27.1%) responded, of whom 55% were male and 83.1% practiced in an academic setting. A total of 11 physicians (6.2%) do not routinely assess vaccination status, whereas 63.5% assess at the time of diagnosis, 29.8% at "well" visits, and 44.4% before initiating immunosuppression. At diagnosis, 51.1% verbally inquire about immunization status, 30.9% obtain records, and 9.0% obtain serology.The influenza (78%), hepatitis B (84%), and varicella (82%) vaccines were most frequently assessed. Fewer than 55.5% of physicians reviewed other vaccines. Physicians using a reminder mechanism were more likely to review immunizations at established visits (41.1% vs 20.8%), and before transfer to an adult gastroenterologist (14.4% vs 2.6%). Lack of coordination of care with primary care practitioners (41%), poor access to immunization records (36%), and inability to offer vaccinations in their immediate area (55%) are barriers to vaccination. Only 28% believed that primary care practitioners were solely responsible for immunizations. CONCLUSIONS: There is practice variation among pediatric gastroenterologists in assessment of immunizations in patients with inflammatory bowel disease, including the specific vaccines assessed, and timing and method of assessment. Inability to coordinate care, access immunization records, and offer vaccines through their medical practice are barriers to adhering to immunization guidelines.

Pilot Development of an Electronic Pediatric Inflammatory Bowel Disease Quiz Game.

OBJECTIVES: Data suggest physicians poorly assess disease-specific literacy and transition readiness in pediatric patients with inflammatory bowel disease (IBD). We piloted an electronic, interactive iPad quiz game that could be used in a clinical setting, with the aims of measuring IBD-related knowledge, and concomitant mood and quality of life (QOL) in a pediatric population. METHODS: Two pediatric IBD clinics developed and tested 2 versions of "Emma." Patients between 10 and 18 years of age played Emma during an office visit. Each patient answered 12 randomly selected disease-related questions and 4 mood-related questions. RESULTS: Sites 1 and 2 tested Emma v1 between May and August 2013. Emma v2 was tested from November 2013 to January 2014 and from September 2013 to January 2014. A total of 56 patients played Emma v1, whereas 60 played Emma v2. In Emma v2, 73.1% of questions were answered correctly. Patients recognized signs of IBD (88%), causes of diarrhea in addition to IBD (79.4%), and could define lactose intolerance (95.8%), but fewer patients understood serological testing used for disease monitoring (68%) or knew that magnetic resonance enterography did not involve radiation (22.9%). Patients tended to report good functioning in the areas of energy, mood, anxiety, and school-related QOL. Patients with Crohn disease, however, reported higher stress levels compared with patients with ulcerative colitis; older patients reported lower energy levels, and postsurgical patients reported lower QOL. CONCLUSIONS: The Emma iPad game has the potential to evaluate gaps in IBD knowledge, assess emotional functioning, and increase patient engagement as a transition tool in the clinical setting.

Clinical features and treatment responses in pediatric lymphocytic and collagenous colitis.

OBJECTIVE: Microscopic colitis (MC) is prevalent in adults investigated for chronic watery diarrhea, yet characterization of pediatric MC is limited. METHODS: Our pathology database was searched from 1995 to 2011 for pediatric cases of lymphocytic colitis (LC) or collagenous colitis (CC). Those with diarrhea persisting for >2 weeks and visually normal colonoscopy were accepted as cases. Demographics, laboratory results, medication use within 3 months of presentation, medical and family history of autoimmune disease, and response to treatment were abstracted. RESULTS: A total of 27 cases were histologically consistent with MC on biopsy; 5 with concomitant enteric infection or isolated abdominal pain were excluded. Twenty-two cases of MC (female patients, 59%; median age at diagnosis, 15.3 years) were included (19 LC and 3 CC). Two had type 1 diabetes mellitus, 2 were anti-nuclear antibody positive, and 2 had common variable immunodeficiency. Of 20 patients who underwent an esophagogastroduodenoscopy, 1 had collagenous sprue and 4 had celiac disease. One presented after the clearance of recurrent Clostridium difficile infection. Previous drug exposures included nonsteroidal anti-inflammatory drugs (n = 7), proton pump inhibitors (n = 6), and selective serotonin reuptake inhibitors (n = 3). Common symptoms in addition to diarrhea included abdominal pain (77.3%) and weight loss (27.3%). Of 17 patients with follow-up, all of the 8 treated with steroids had some response: 57.1% (4/7) responded to mesalamine and 42.9% (3/7) responded to bismuth subsalicylate. CONCLUSIONS: In this cohort of pediatric patients, LC was much more common than CC. As described in adults, we observed associations with celiac disease, type 1 diabetes mellitus, and medications; we additionally saw an association with immunodeficiency. Our patients showed greater response to steroids than mesalamine or bismuth.

Factor analysis of the stigma scale-child in pediatric inflammatory bowel disease.

OBJECTIVE: Illness stigma, or perceived stigma related to a chronic health condition, is pervasive among youth with inflammatory bowel disease (IBD). However, no studies exist examining the psychometric properties of illness stigma measures in this population. Using a modified version of the Child Stigma Scale originally developed for youth with epilepsy, the current study investigated the factor structure and validity of this adapted measure (i.e., Stigma Scale - Child; SS-C) in youth with IBD. METHODS: Factor analyses were conducted to determine the most parsimonious factor structure for the adapted 8-item Stigma Scale - Child in a sample of 180 youth with IBD. Correlations were conducted to assess convergent validity, and a multiple regression was conducted to further evaluate the measure's predictive validity of child depressive symptoms. RESULTS: The most parsimonious model for the SS-C is a one-factor solution with an error covariance between the two items assessing concealment/disclosure of IBD diagnosis. CONCLUSIONS: The SS-C is a psychometrically sound illness stigma measure in pediatric IBD that demonstrates strong convergent validity with psychosocial adjustment factors such as thwarted belongingness, illness uncertainty, and illness intrusiveness, as well as strong predictive validity with youth depressive symptoms. The SS-C is a viable option for use as a brief screener in youth with IBD across clinical and research settings.

IBD Camp Oasis: A look at Participants' Social-Emotional Well-Being and Protective Factors During Camp and Beyond.

Background: Camp Oasis is an annual week-long camp serving children with inflammatory bowel disease (IBD) and hosted by the Crohn's and Colitis Foundation. Youth with IBD are at increased risk for mental health challenges, with Camp Oasis potentially mitigating these risks. The aim of this study is to measure change in and predictors of social-emotional well-being and protective factors of self-worth as a result of attending Camp Oasis. Methods: Between 2012 and 2019, a voluntary survey was administered to participants and their caregivers to reflect on their perceptions of social/emotional well-being and protective factors related to chronic disease. T-tests compared change in participants' and caregivers' perceptions before and after camp; path analyses examined the key predictors of social-emotional well-being. Results: A total of 6011 online surveys were analyzed. Participants and caregivers reported consistently positive perceptions of participants' experiences during and after camp. Significant improvements in confidence, independence, activity, comfort around others, being more open about disease, and taking medication as expected were observed. Being new to Camp Oasis was one of the strongest predictors of both disease-related self-efficacy and social connections after camp. Conclusions: The uniformly high rates of participants' perceptions during camp suggest camp is a life-changing experience for youth with IBD, reduces disease-related stigma, and enhances confidence and social skills. Participants' positive experiences appear to foster notable benefits after camp in terms of openness, their sense of belonging, connections, and confidence.

The pathogen recognition receptor NOD2 regulates human FOXP3+ T cell survival.

The expression of pathogen recognition receptors in human FOXP3+ T regulatory cells is established, yet the function of these receptors is currently obscure. In the process of studying the function of both peripheral and lamina propria FOXP3+ lymphocytes in patients with the human inflammatory bowel disease Crohn's disease, we observed a clear deficiency in the quantity of FOXP3+ lymphocytes in patients with disease-associated polymorphisms in the pathogen recognition receptor gene NOD2. Subsequently, we determined that the NOD2 ligand, muramyl dipeptide (MDP), activates NF-kappaB in primary human FOXP3+ T cells. This activation is functionally relevant, as MDP-stimulated human FOXP3+ T cells are protected from death receptor Fas-mediated apoptosis. Importantly, apoptosis protection was not evident in MDP-stimulated FOXP3+ T cells isolated from a patient with the disease-associated polymorphism. Thus, we propose that one function of pathogen recognition receptors in human T regulatory cells is the protection against death receptor-mediated apoptosis in a Fas ligand-rich environment, such as that of the inflamed intestinal subepithelial space.

The impact of illness intrusiveness and overparenting on depressive symptoms in parents of youth with inflammatory bowel disease.

PURPOSE: Inflammatory bowel disease (IBD) management creates significant caregiver demands that can interfere with parents' ability to engage in a number of role functions (i.e., illness intrusiveness) well into their child's adolescence, potentially resulting in excessive or misdirected parenting (i.e., overparenting). Disruptions and limited access to routine and valued activities (e.g., family, work, and leisure) due to IBD and excessive parenting may result in parents neglecting their own personal and emotional self-care needs, increasing their risk for depressive symptoms. To explore these associations, the present study examined parents' experience of illness intrusiveness and subsequent overparenting as serial mediators in the association between disease severity and parent depressive symptoms. DESIGN AND METHODS: Participants were 146 caregivers of adolescents with IBD from an outpatient pediatric gastroenterology clinic. During a scheduled outpatient visit, parents completed measures of illness intrusiveness, overparenting, and depressive symptoms. Pediatric gastroenterologists provided ratings of disease severity. RESULTS: Several direct and indirect associations were observed among the modeled variables. Notably, mediation analysis revealed a significant disease severity → illness intrusiveness → overparenting → depressive symptoms serial indirect effect. CONCLUSIONS: Parents' experience of greater IBD-induced lifestyle disruptions is associated with increased overparenting and a heightened risk for depressive symptoms. PRACTICE IMPLICATIONS: Parents should be encouraged to establish and maintain a healthy balance between parenting and self-care/role function activities, especially during adolescence when greater youth autonomy and independence are crucial. These types of clinical efforts may reduce the likelihood of parents experiencing depressive symptoms, and have the added benefit of improving adolescent IBD self-management.

Illness stigma, body image dissatisfaction, thwarted belongingness and depressive symptoms in youth with inflammatory bowel disease.

BACKGROUND: Elevated depressive symptoms are observed in a significant number of youth with inflammatory bowel disease (IBD) and have been linked to illness stigma and social isolation. Body image dissatisfaction is an understudied variable in the pediatric IBD literature that may be related to both stigma and social difficulties. It is suspected that, due to the stigmatizing nature of IBD, some youth may feel self-conscious about their body image, which contributes to decreased feelings of social belongingness and ultimately depressive symptoms. The current study tested an illness stigma→ body image dissatisfaction→ thwarted belongingness→ depressive symptoms serial mediation model, in which IBD stigma was hypothesized to indirectly influence youth depressive symptoms through the sequential effects of stigma on body image dissatisfaction and thwarted social belongingness. METHODS: Youth with IBD (N = 75) between 10 and 18 years old were recruited from a pediatric gastroenterology clinic and completed psychosocial measures. Disease severity was assessed by a physician global assessment. Current medications and BMI data were collected. RESULTS: Analyses revealed significant direct effects among the modeled variables and a significant serial indirect path for illness stigma→ body image dissatisfaction→ thwarted belongingness→ depressive symptoms, controlling for sex, BMI and prednisone medication. CONCLUSIONS: Youth who perceive greater IBD stigma are more likely to experience increased body image dissatisfaction due to their IBD, which may engender feelings of social estrangement and ultimately elevated depressive symptoms. Depressive symptoms and the psychosocial challenges faced by youth should be routinely monitored as part of comprehensive IBD management.