Study Examines Healthcare Use, Mental Health and Nonadherence in Pediatric Organ Recipients
How people use healthcare services is often complex, particularly when it comes to the interplay of many biopsychosocial factors. A recent study published in the journal Pediatric Transplantation focused on the association of factors that impact healthcare usage among pediatric solid organ transplant recipients, particularly mental health diagnoses and medication nonadherence.
“A pediatric transplant is a long-term, high-stress experience that deeply impacts children’s and families’ mental health,” expressed Sonnie Mayewski, a doctoral candidate at the FSU College of Social Work who led the research team, including Associate Professor Michael Killian and Zhe Yang, another social work doctoral candidate.
Mental health diagnoses often impact daily life for the individuals experiencing them and the people around them, making life increasingly complex. But the stakes are often much higher for people who deal with complex medical needs.
“Mental health challenges can make it harder to follow complex immunosuppressant regimes,” shared Killian about the impact on pediatric transplant recipients. “Missed doses can quickly translate into serious complications, rejection episodes and emergency care.”
The Importance of Data
The study used a large, multistate electronic health record dataset from the OneFlorida+ Data Trust, including anonymous pediatric transplant patients across Florida, Georgia, and Alabama, to examine how mental health, nonadherence, and healthcare utilization may interact. The large dataset allowed the research team to study 2,000+ pediatric patients across three states and multiple healthcare systems over several years.
The dataset also strengthened the generalization of the study’s findings because it:
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Draws from routine electronic health records, which reflect “real world” clinical practice across kidney, liver, heart, and lung transplant programs rather than a single center’s experience
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Makes it possible to standardize diagnoses, follow patients over time and calculate person‑time‑adjusted rates of emergency department and inpatient visits using robust statistical models.
The Prevalence of Mental Health Challenges and Nonadherence
Findings indicated a significant rate of mental health conditions among pediatric transplant patients, particularly anxiety (21.6%), depression (15.3%), attention deficit/hyperactivity disorder (13.7%) and post-traumatic stress disorder (13.1%). Overall, 1 in 5 pediatric transplant recipients had a documented mental health diagnosis during the 6-year study.
Some patterns of acute care use quickly emerged in the study. Anxiety and PTSD, rather than depression, were significant predictors of higher emergency department use. Anxiety, especially, was associated with a 34% higher rate of emergency department visits, and that rate, combined with PTSD, doubled. “This suggests that hypervigilance, medical trauma and fear may drive both health behaviors and health seeking,” Mayewski explained.
Clinician-documented nonadherence to immunosuppressant medication in 13.3% of patients also showed to be a significant predictor of acute care use, with children who veered away from the necessary medication regimen experiencing twice the rate of emergency department visits and twice the rate of inpatient admission. “On its own, nonadherence is independently associated with higher levels of costly, often preventable hospital-based care,” stated Yang.
“Examining mental health, nonadherence and healthcare utilization recipients together shows that there are not separate problems,” emphasized Killian. “They reinforce one another and contribute to higher rates of emergency department and inpatient visits. Understanding these relationships helps transplant teams identify who is most at risk earlier and design supports that address both psychological well‑being and medication-taking behavior.”
An important additional factor is that the data capture only conditions documented with diagnostic codes. “We must address the psychological, family and structural contexts in which children are trying to manage lifelong transplants. The findings likewise suggest that psychosocial care and adherence support should be core components of transplant medicine,” concluded Mayewski. “Integrating routine, standardized mental health screening and adherence assessments into post‑transplant follow‑up can help teams detect emerging problems early, especially among older adolescents and youth with prior anxiety, depression, or PTSD diagnoses.”