Michele H. Maddux, PhD: Mental and Behavioral Health in Pediatric IBD

Michele H. Maddux, PhD

Credit: Children's Mercy

As a chronic condition highly prevalent in pediatric and adult patients alike, inflammatory bowel disease (IBD) requires as much intervention to its symptoms and effects on the digestive as it does attention to wellbeing of the affected individual.

Especially in a younger patient, the psychiatric burdens of living—and aging—with IBD may be more impactful than the standard treating clinician may understand.

In an interview with HCPLive during the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) 2023 Annual Meeting in San Diego, Michele H. Maddux, PhD, director of Gastroenterology Medical Transition, a child psychologist and associate professor of pediatrics at University of Missouri-Kansas City School of Medicine, discussed the behavioral and emotional challenges of pediatric IBD.

Maddux additionally discussed best strategies for aiding in pediatric-to-adult transition to care, as well as the unique care team roles involved in such patients.

HCPLive: What are some of the age-specific psychiatric and behavioral issues that need to be addressed in children and adolescents with IBD?

Maddux: This varies greatly and overall, youth with IBD do very well. However, some children and adolescents do struggle with frequent school absences and absenteeism from other activities (e.g., sports, spending time with friends, etc). This can be a cause of anxiety or depressed mood, especially if they are falling behind in school or feel disconnected from their peers/friends, and research shows that one-fourth to one-third of youth with IBD experience clinically significant depression and/or anxiety.

Medication adherence is also a significant issue, as many youth with IBD are taking lots of different medications, each with their own dosing schedule. All in all, their quality of life can be negatively impacted. For all of these reasons, use of validated screeners is an essential part of standard care for youth with IBD.

HCPLive: In an ideal setting, what is the dynamic between yourself and parents/guardians in treating a pediatric patient with IBD?

Maddux: In an ideal setting (this is how our IBD Program is designed), I meet a child/adolescent and their parent/caregiver at the time of diagnosis, or shortly after. Patients and caregivers complete various screeners (e.g., adherence, quality of life, psychosocial functioning), I review those with the family, and I need have a discussion with the patient/family on any challenges with medication adherence, school attendance and need for school-based accommodations (e.g., 504 Plan), any difficulty participating in preferred activities, sleep, concerns with mood/behavior, and how the patient is adjusting to the new diagnosis.

I also spent time evaluating how parents/caregivers are coping. At that time, and based on the specific needs of the patient, I may refer them out to a mental health provider or follow-up with them myself in our GI clinic.

Beyond that, ideally, I am involved in the process of helping the child/adolescent become more independent in managing their health care needs and providing support to transfer to adult care when the time comes.

HCPLive: Can you discuss the gastroenterology medical transition for aging adolescents? What are the primary goals of transition? Who is involved in the process on the care team?

Maddux: There are 2 processes involved: transition and transfer. In terms of transition, the goal is to achieve skills mastery, confidence, and self-efficacy regarding their ability to manage various health care tasks (e.g., taking medication independently, being familiar with pertinent aspects of their IBD diagnosis and treatment).

Another goal for transition is to support parents in reallocating responsibilities from the parent to the adolescent, such that they become a “coach” rather than the “driver.” In terms of transfer, the goal is to educate young adults on the differences between pediatric and adult IBD care, building self-efficacy in communicating with medical providers, and ultimately successfully establishing care with an adult GI provider so that there is no gap in care.

In terms of who is involved on the care team, this varies greatly by IBD center. There is no “one size fits all” but ideally, this should be a multidisciplinary responsibility. Sometimes transition/transfer is the responsibility of the medical provider and nursing staff, sometimes it is driven by social work, sometimes there are designed transition coordinators/navigators, etc. It varies greatly.

HCPLive: What are some of the indicators that an adolescent is struggling with the transition to adult GI care?

Maddux: I tend to think of this in terms of risk factors…in other words, what factors are at play that might cause difficulty or challenges for the patient and family. In our work, we see that patients who have many no-shows/cancellations or who have not been seen for routine care in the past 12 months, typically are those that struggle the most, especially in terms of continuity of care.

Patients who are followed by multiple subspecialties can also be at greater risk, since transfer of care must happen with lots of different adult providers; this can be quite complex and overwhelming for patients and families. However, one of the strategies to identify risk factors is to evaluate perceived barriers to successful transition and/or transfer, from the perspective of both patients and caregivers.