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

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.