‘Lack of patient activation’ in pediatric IBD may be poor health literacy in disguise
SAN FRANCISCO — Patient activation, earned trust and health literacy at patient, provider and health system levels are critical to overcoming health disparities among pediatric patients with inflammatory bowel disease, noted a presenter.
“Disparities in health in the U.S. have a lot to do with the interplay of these [socioeconomic] determinants, particularly race and ethnicity, and how they interact or intersect with the American experience,” Dedrick E. Moulton, MD, professor and chair of pediatrics at LSU Health Sciences Center New Orleans, said at the Crohn’s and Colitis Congress. “When we think about our health outcomes, we see that 20% of the modifiable factors impacting health are what we do in our clinical engagements, but 80% may be influenced by these societal variables.”
As the demographics of pediatric patients with IBD in the U.S. shift to include a greater proportion of non-white races and ethnicities, Moulton told attendees this will impact access to care, diagnosis delays, resource utilization and disease-related outcomes. Looking more closely at patient-level factors among disparate populations, he added that the legacy of mistrust and how providers engage with their patients will be “critical to understand” moving forward.
“The important thing that I like to highlight here is in many of these engagements to prevent the health disparity, you have to begin the process by earning the trust,” Moulton said.
Key to accomplishing this is shifting disease perceptions through patient activation and health literacy, he noted.
According to Moulton, patient activation refers to patients’ possession of critical skills, knowledge and motivation as well as active participation in disease management. He noted that prior research published in Gastroenterology and Clinical Gastroenterology and Hepatology showed that increased patient activation was positively associated with clinical remission, overall well-being and quality of life.
Along with patient activation, health literacy is the capacity in which patients understand basic health data. The function of health literacy is to understand the purpose of screening tests, the concept of an asymptomatic but chronic disease, and engagement in shared decision-making.
Although patients should be proactive in improving their health literacy, Moulton advised attendees that providers and health systems must also remove unnecessary complexity from their language, support patient education and empowerment, and hone their communication skills.
“Health literacy can sometimes be in disguise as lack of patient activation,” Moulton said. “If the patient has not activated with you, you will understand them as not actually understanding the process that needs to happen to get the care. And that lack of activation may be attributed to lack of engagement or connection between the patient and the provider.”
References:
- Barnes EL, et al. Gastroenterology. 2021;doi:10.1053/j.gastro.2020.08.064.
- Sofia MA, et al. Clin Gastroenterol Hepatol. 2024;doi:10.1016/j.cgh.2024.01.050.
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Moulton D, et al. Breaking barriers: Addressing disparities in IBD care. Presented at: Crohn’s and Colitis Congress; Feb. 6-8, 2025; San Francsico.