Improving pediatric inflammatory bowel disease outcomes through social determinants of health interventions

Journal of Pediatric Gastroenterology and Nutrition · 2026-01-08

Understanding the relationship between social determinants of health (SDOH) and pediatric inflammatory bowel disease (IBD) is essential for delivering equitable care. SDOH are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks. These are grouped into five categories: economic stability, neighborhood/built environment, healthcare access/quality, education access/quality, and social/community context. Marginalized groups are most affected by SDOH, often stemming from historical inequities. Moreover, there is a strong link between poverty and race in the United States, rooted in structural racism and discrimination.1 Figure 1 depicts an overview of SDOH and pediatric IBD. This article explores how each SDOH category impacts pediatric IBD and offers solutions for improved care. Children with IBD from low-income families have higher healthcare utilization rates and face more financial strain from direct and indirect costs. One study found that compared with children from higher-income neighborhoods, children from low-income neighborhoods were 17% more likely to require hospitalization, 21% more likely to visit the emergency department, and nearly four times as likely to have IBD-related clinician visits. Moreover, children with Crohn's disease (CD) in these neighborhoods had a 22% higher risk of needing surgery within 3 years of diagnosis.2 Socioeconomic factors, particularly public insurance status, exacerbate these disparities in care access and outcomes. Beyond direct healthcare costs, indirect costs like transportation, specialized diets, and lost parental work time add significant barriers to care for families with limited financial resources. Access to specialized IBD care is heavily influenced by geographic location. Studies show that patients from rural areas have less outpatient gastroenterology visits but more IBD-related hospitalizations and emergency department visits compared with patients from urban areas.3 While telehealth has emerged as a potential solution, it has uncovered new challenges related to the built environment such as reliable broadband access, stable housing, and appropriate devices. A recent study found that paradoxically, children with IBD living in areas of high opportunity were more likely to utilize telehealth than children from lower opportunity neighborhoods.4 These findings underscore how the physical environment, technological infrastructure, and other social determinants impact pediatric IBD care access and outcomes. Early initiation of biologic therapy is now considered standard of care in IBD management. However, several factors can delay this critical treatment, with the most significant being Black race, greater distance from treatment sites, and insurance approval challenges.5 These barriers disproportionately affect patients with public insurance, creating significant disparities in timely access to optimal care. Language barriers also pose challenges in healthcare delivery. While studies on language barriers in pediatric IBD are limited, broader pediatric gastroenterology data shows that Spanish language preference is linked to higher odds of missed clinic visits, and this has worsened with telehealth.6 These patterns highlight how language barriers can worsen access challenges, especially as healthcare models evolve to include more technological infrastructure. Children with IBD miss more school than their peers, with over one third being “persistently absent” as defined as missing 10% or more of school days.7 Children with Medicaid insurance and Black and Hispanic children already have more emergency department visits and hospitalizations for IBD compared with children with private insurance and White children respectively. These disparities underscore the compounded impact that SDOH can have on academic performance in children with IBD. Additionally, research on adult populations show healthcare literacy and information-seeking behaviors including involvement in IBD patient-advocacy organizations varies by racial and ethnic groups.8 Cultural context and lived experiences shape how individuals understand and manage IBD. A 2006 study found that White patients with IBD reported more frequent interactions with IBD organizations and greater access to disease management resources compared to Black and Hispanic patients.8 Black and Hispanic patients were also more likely to attribute their IBD to factors such as stress, smoking, or infections. Differences in beliefs may reflect multiple underlying factors including healthcare provider communication, cultural context, and access to health education. Such factors may also impact how patients approach their disease management and patient activation—the skills, knowledge, and confidence needed to manage one's health condition. SDOH also create significant barriers to clinical trial participation, limiting research diversity and generalizability. Currently, 90.5% of IBD trial participants are White, with only 22% of studies reporting race at baseline, despite significant heterogeneity in IBD outcomes between racial groups.9 SDOH barriers include transportation costs, scheduling conflicts, language barriers, and historical medical mistrust compounded by lack of diverse research staff.10 These barriers highlight the need for comprehensive IBD care that addresses medical, psychosocial, and research participation barriers to ensure equitable outcomes for all children. Addressing disparities in pediatric IBD care requires a multi-level approach encompassing direct patient support, practice and organizational reform, community outreach, increased research participation and industry and policy-level changes (Figure 2). At the patient level, proactive integration of care coordinators and patient navigators is crucial. These professionals assist with transportation, scheduling, and disease management complexities, especially for families facing linguistic or literacy barriers. Although data on navigators is limited, studies suggest they improve access, treatment adherence, and may be cost-effective.11 Additionally, providing patients with access to information in their own language could improve both health literacy and adherence to instructions and follow-up. Healthcare systems can mitigate the impact of SDOH on children with IBD through expanding subspecialty access in underserved areas. This includes establishing loan forgiveness programs specifically for pediatric gastroenterology specialists, similar to National Health Service Corps (NHSC) models. Additional strategies include creating fellowship training tracks with rural rotations, implementing financial incentives such as salary differentials and relocation bonuses, or practice establishment grants for specialists in high-need areas. Practices should offer communication options beyond digital platforms as increasing reliance on patient portals and electronic health records can exclude families without reliable internet access. This includes a “communication preferences” assessment during initial visits, dedicated multilingual phone hotlines for appointment scheduling and clinical questions, and maintaining non-digital channels for appointment reminders and important updates. Healthcare systems can establish partnerships with local libraries or community centers to provide computer/internet access for telehealth visits, especially for families with limited technological resources. Given that children with IBD miss significantly more school than their peers, providers should advocate for educational accommodations.12 This includes establishing 504 Plans, federally mandated individualized educational plans that allow children with chronic illnesses to catch up academically without penalty. These plans can include discrete bathroom access, tutoring for missed classes, and extended time for examinations. Healthcare providers should use standardized physician letter templates to communicate diagnosis, and accommodation needs to school and utilize educational resources such as Crohn's and Colitis Foundation brochures to help school personnel understand IBD and provide the necessary student support. Addressing SDOH requires engagement with broader community networks. In our current era, community refers not only to people and places in our physical environment but also to online communities. Patients and families should be provided a list of vetted internet resources with diverse representation such as the Crohn's and Colitis Foundation's Spanish website (https://www.crohnscolitisfoundation.org/es/home) and the Color of Gastrointestinal Illnesses website (https://colorofgi.org) and Instagram: (@colorofgi). Beyond online influences, providers and hospital systems can partner with school systems and community organizations to engage leaders and members of underserved groups. Additionally, institutions should prioritize hiring a diverse workforce and continue to offer training sessions that emphasize understanding systemic racism, implicit bias, and SDOH to mitigate their impact on pediatric health outcomes. Addressing the research participation barriers requires targeted interventions to ensure clinical trials reflect all children affected by IBD. This includes establishing recruitment diversity benchmarks, providing logistical support (travel reimbursement, flexible scheduling, childcare), developing community partnerships with trusted organizations to improve trial awareness, and hiring diverse research coordinators. Sustainable improvement in pediatric IBD care requires policy changes to address systemic barriers. These include inflexible work schedules, limited transportation, complex prior authorization processes, lack of paid sick leave, geographic distance from specialty care, and residence in food deserts. Rather than working independently, clinicians can leverage existing organizational resources that provide structured pathways for engagement. Professional societies such as the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition and the American Academy of Pediatrics, as well as patient advocacy organizations like the Crohn's & Colitis Foundation, can facilitate opportunities to engage with legislators. Most Children's Hospitals maintain government affairs departments where pediatricians can access support for policy work. With potential funding challenges in research, advocacy through established channels becomes critical for industry partners to increase grant support for health equity research. In summary, SDOH have a wide-ranging impact on the health of children with IBD. Children from marginalized communities including those living in rural areas or disadvantaged neighborhoods and Black and Hispanic children, often incur the greatest impact of SDOH on their health. However, there are opportunities to improve outcomes, from patient-level interactions to policy change. Engagement in initiatives to mitigate the influence of SDOH will ultimately lead to better pediatric IBD outcomes. This work was supported by the National Institutes of Health T32 grant DK067009. The authors declare no conflicts of interest. This descriptive report did not involve human subjects research and therefore did not require institutional review board approval or patient consent.

North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition position paper on the therapeutic drug monitoring in pediatric inflammatory bowel disease

Journal of Pediatric Gastroenterology and Nutrition · 2025-07-21 · 4 citations

Inflammatory bowel diseases (IBD) require effective therapies to prevent morbidity and maintain quality of life. The introduction of biologic agents, beginning with monoclonal antibodies targeting tumor necrosis factor (TNF) alpha, has launched a new era of advancements that have markedly improved short- and long-term outcomes of Crohn's disease and ulcerative colitis. Along with these improvements, there have been challenges to address in optimizing use of biologic therapies in children with IBD. Young children may have rapid drug clearance, and growing children have changing medication needs related to changes in body size, metabolism, and development. For these and other reasons, one size (one dose) does not fit all. Therapeutic drug monitoring (TDM), which involves measurement of drug concentration in serum usually, typically at the predose trough, has emerged as a valuable tool for optimizing dosing and preventing pharmacokinetic failure. This society paper reviews the use of TDM, including target ranges during induction and maintenance therapy for anti-TNF agents and for emerging biologics. This report has been compiled by pediatric gastroenterologists on behalf of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition IBD committee after extensive review of the current literature. The purpose of this clinical position statement is to provide guidance to clinicians in the use of TDM to optimize the treatment of children with IBD.

648: TP-317, A NOVEL ORAL BLT1 AGONIST THERAPY FOR INFLAMMATORY BOWEL DISEASE, EXHIBITS ANTI-INFLAMMATORY AND EPITHELIAL BARRIER PROTECTIVE EFFICACY IN MURINE DSS COLITIS AND TNFΔARE ILEITIS

Gastroenterology · 2025-05-01

Su1994: XBP1 IN T CELLS IS CRITICAL TO REDUCE INTESTINAL INFLAMMATION

Gastroenterology · 2025-05-01

Regulation of intestinal regulatory T cells via stress response pathways in inflammatory bowel disease

Autoimmunity · 2025-12-22 · 1 citations

Cell stress, including endoplasmic reticulum (ER) stress, heat shock, and hypoxia, plays a pivotal role in cellular homeostasis and immune regulation, particularly in the intestine. ER stress, a key aspect of cell stress, triggers the unfolded protein response (UPR) to restore balance by managing misfolded proteins or inducing apoptosis if unresolved. The activation of these stress responses has emerged as a critical contributor to intestinal inflammation in conditions like inflammatory bowel disease (IBD). Regulatory T cells (Tregs), vital for maintaining mucosal immune tolerance, are strongly influenced by cellular stress, with the UPR shaping their stability, metabolic programming, and function. Microbial dysbiosis and reduced short-chain fatty acids (SCFAs) disrupt these adaptive pathways, further impairing Treg function. In this review, we explore how UPR signaling shapes Treg metabolism and intestinal inflammation. Identifying gaps in UPR-mediated adaptation and stress thresholds, we thus propose microbiome- and ER-stress-based therapeutic strategies as putative strategies for restoring immune balance in IBD.

Su1754: UNBIASED PROTEOMICS AND METABOLOMICS REVEALS UNIQUE BIOMARKERS IN PEDIATRIC PSC-IBD

Gastroenterology · 2025-05-01

Network-Based Multiomic Nutrient-Associated Predictive Models for Inflammatory Bowel Disease

Current Developments in Nutrition · 2025-10-04 · 3 citations

Background: Inflammatory bowel disease (IBD) is a multifactorial disease involving a complex interplay between host physiology, the gut microbiome, and environmental factors such as diet and nutrition. Multiomic analyses may help to identify potential nutrient-associated omic predictors of IBD, allowing for the design of targeted dietary approaches for disease prevention and management. Objectives: Our objective was to apply the bioinformatics tool, Consolidated Analysis of Network Topology and Regression Elements (CANTARE), to an integrated multiomics dataset to generate nutrient-associated predictive models for IBD. Methods: We previously used a published data set of microbiome relative abundance (mb), untargeted metabolomics (met), and microbial-derived enzymes (e) in stool samples from 153 adults (IBD = 111, healthy control = 42) to build a network of cross-omic relationships that differed by IBD status. We now revisit this network to identify diet-associated predictive models of IBD using linear regression via the CANTARE workflow. Results: values < 0.001) for M1, M2, and M3, respectively. Some metabolites, such as histamine, were associated with greater odds of IBD, whereas others, such as ascorbate (vitamin C), pyridoxamine (vitamin B6), and choline, were associated with lower odds of IBD. Conclusions: CANTARE provides an unbiased and comprehensive strategy that can integrate multiple omics to identify potential nutrient-associated predictors of IBD. Our models support the generation of hypotheses for follow-up targeted investigation in future dietary interventions for the management of IBD.

Primary sclerosing cholangitis: a narrative review of diagnostic and prognostic biomarkers

Translational Gastroenterology and Hepatology · 2025-10-01 · 2 citations

Background and Objective: Primary sclerosing cholangitis (PSC) is an autoimmune biliary fibrosing disease characterized by inflammation and injury of the intra- and/or extrahepatic bile ducts. The pathogenesis of PSC is poorly understood but is believed to be multifactorial, involving genetic predisposition, immunological dysregulation, and environmental influences. These may include disturbances in the gut-liver axis such as immune dysfunction in the colon and liver, alterations in the fecal and biliary microbiome, conjugation of bile acids into toxic species, and compromised intestinal epithelial integrity due to colitis, resulting in translocation of bacterial byproducts to the liver. There is a critical need for diagnostic and prognostic biomarkers that would enhance management and outcomes for patients with PSC. Additionally, validation of such biomarkers could serve as measurable endpoints when conducting future clinical trials. This aim of this paper is to review the available literature on candidate diagnostic and prognostic biomarkers in the adult and pediatric PSC populations. Methods: Original studies investigating biomarkers in serum, bile, and tissue published until November 2024 were systematically searched on PubMed, with a specific focus on newer studies published in the past 10 years and pediatric studies. Small studies with fewer than 10 patients in each study group, animal model studies, and studies with a focus on biomarkers for cholangiocarcinoma were excluded. Key Content and Findings: Diagnostic and prognostic biomarkers summarized in this review include autoantibodies, markers of innate and adaptive immune responses, extracellular vesicles, epigenetic modifications, microbiome, proteins involved in lipid metabolism and bile acid homeostasis, and markers of fibrogenesis. Novel concepts for future biomarker discovery and implementation, including the potential for insights to be gained from the pediatric PSC population, are explored. Conclusions: There is a critical need for further biomarker discovery for PSC as it will provide clues to disease pathogenesis and uncover candidate targets for therapeutic intervention.

Tu2094: COHORT FOR PEDIATRIC TRANSLATIONAL AND CLINICAL RESEARCH IN IBD (CAPTURE IBD): INITIAL ENROLLMENT OF A DIVERSE AND ADVANCED THERAPY-EXPOSED PROSPECTIVE COHORT

Gastroenterology · 2025-05-01

National perspectives of barriers by insurance and pharmacy benefit managers in pediatric inflammatory bowel disease

JPGN Reports · 2025-02-10 · 1 citations

Objectives: Early biologic initiation, dose optimization, and therapy modification based on disease phenotype are key to improving outcomes in pediatric inflammatory bowel disease (IBD). Enacting optimized therapy is often impeded by the lack of United States Food and Drug Administration (FDA) approval for pediatric use of newer advanced therapies or intensified dosing regimens. These barriers often result in initial payor denial of coverage and added prior authorization burden on physicians, leading to patient delays in medication initiation and therapy optimization, and development of disease-related morbidity. Methods: A sample of pediatric patients experiencing payor barriers to IBD biologic treatment, containing data on treatment delays and adverse outcomes, was obtained through a nationwide survey of pediatric gastroenterology providers via a longstanding, widely used pediatric gastroenterology Listserv (housed at University of Vermont) from January 2023 to August 2023. Results: Providers across the United States reported information for 113 patients experiencing payor barriers for biologics IBD treatment. Ultimately, 77% of initial denials were approved. The median time to receiving medication was 18 days, with administrative time (prior authorization and appeal) requiring a median of 180 min. More than half (60%) of patients experienced adverse outcomes or worsened quality of life due to delays in treatment, including 21% of patients who were hospitalized. Conclusions: These findings highlight the detrimental impact of payor barriers to treatment for children with IBD. Reforms that minimize delays in care and provider administrative burden are imperative to ensure that children receive timely evidence-based treatment that improves disease outcomes and prevents adverse events.