Discussion Part 2 – Special Considerations in Transitioning
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Approximately 25% of IBD patients present during childhood or adolescence (Heyman M et al. J Pediatr. 2005). This implies that by the time patients are transferring care to adult clinic they may have had IBD for many years. Pediatric-onset IBD also tends to be more extensive and more severe, so these patients are more likely to be on long-term, chronic immunosuppression with possible prior exposure to corticosteroids (Van Limbergen J et al. Gastroenterology. 2008; Goodhand J et al. Inflamm Bowel Dis. 2010; Pigneur B et al. Inflamm Bowel Dis. 2010). Therefore, it is important to carefully consider healthcare maintenance in young immunosuppressed IBD patients transferring care from pediatric to adult GI. This includes checking vaccination status, cancer screening, assessing bone density, dermatologic and ophthalmologic health, and mental health screening (DeFilippis EM et al. Pediatrics. 2016; Breglio KJ et al. Inflamm Bowel Di. 2013).
Pediatric patients are often given monitored anesthesia care and propofol during endoscopy. This should be considered at transition to adult procedures for patient comfort, as some young adults have difficulty with a change in sedation plan to conscious sedation.
Young adults with IBD have significantly higher rates of anxiety and depressive symptoms as compared to healthy peers and other chronic conditions (Greenley RN et al. J Ped Psychol. 2010; Mikocka-Walus A et al. Inflamm Bowel Dis. 2016). Despite common mood disturbance, a minority of young adults seek psychological services (Bennett AI et al. World J Gastronterol. 2016). It is important for adult and pediatric gastroenterologists to screen for anxiety and depression in this population.
There are multiple patient, parental, and provider factors that can interfere with a smooth transition to adult IBD clinic. Sub-optimal transition is a common problem, as some studies report that only a minority of adolescents and young adults had mastered self-management skills at the time of transfer (Sebastian S et al. J Crohns Colitis. 2012; Wood DL et al. Academic Pediatrics. 2014). Mental health diagnoses, public insurance, lack of insurance, a history of medication non-adherence, and more severe disease, have all been linked to sub-optimal transition (Pearlstein H et al. J Pediatr Gastroenterol Nutr. 2020). Lack of trust and negative perceptions in the adult medical team, insufficient developmental maturity, psychosocial difficulties, and lack of goal-setting have also been suggested as potential barriers (Paine CW et al. Inflamm Bowel Dis. 2014; Leung Y et al. Inflamm Bowel Dis. 2011). Health care costs are higher for patients with pediatric-onset IBD, which can further increase the financial strain on emerging adults with IBD (Bickston SJ et al. J Manag Care Pharm. 2008; Kappelman MD et al. Gastroenterology. 2008; Afzali A. WJG. 2017).
Over-involved “helicopter” parents, deficits in provider skill, and insufficient provider communication have also been identified as barriers (Paine CW et al. Inflamm Bowel Dis. 2014). Providers themselves identify lack of resources, limited clinic time, and insufficient training as additional obstacles (Sebastian S et al. J Crohns Colitis. 2012). For adult IBD providers, it is important to recognize that not all emerging adults are fully prepared to engage in the adult healthcare model. Communication between the adult and pediatric IBD providers, a proactive and communicative approach with the patient, and goal setting can identify and address potential barriers before they arise.