To date, no large-scale study has compared outcomes of the transition process with or without a structured transition program for patients with IBD. A recent retrospective case–control study compared disease characteristics and compliance in 100 adolescents with adult controls matched for disease duration.64
All adolescents were seen at a biweekly transition clinic of IBD patients ages 16–24. Patient management was shared between a pediatric and adult gastroenterologist as well as an IBD nurse. A greater percentage of adolescents required hospital admission (46% compared to 14% of adults, P
< 0.0001), azathioprine (46% compared with 17% of adults, P
< 0.0001), and infliximab (20% compared with 6% of adults, P
< 0.05). Adolescents missed a median number of 20% of their appointments compared with 0% in adults (P
< 0.0001). Overall, these results support the need for a transition clinic, as adolescent patients may have more severe disease compared with adult patients with the same duration of disease and have lower rates of compliance to clinic follow-up. Furthermore, given that adult gastroenterologists will ultimately take over the care of these patients, it suggests that they should get involved early on in the care of these patients.
Hait et al9
published a review on the suggested protocol for the transition process. Since this publication, a study from the same authors found that there continued to be gaps in patient knowledge, as a survey of adult gastroenterologists revealed that deficits in patient knowledge of medical history and medications are the two most important perceived problems during transitioning to adult care.10
A medication adherence questionnaire study of 64 adolescents found that the most frequently reported barriers to taking medications appropriately were lack of time (33%), feeling well (16%), and belief that the medication was ineffective (14%) or had side effects (14%).65
Another study of 90 adolescents found that longer time since diagnosis, greater perceived disease severity, and lack of autonomous motivation to adhere predicted lower adherence to prescription medications.66
While a small study of patients and families who had undergone transition predominantly through the use of a joint visit attended by both adult and pediatric gastroenterologists reported the experience as positive,67
the literature remains relatively void of studies to answer the question of the impact of a structured transition program on patient outcomes.
Existing transition programs and clinics are highly variable, ranging from primarily educational didactic modules, joint visits with both pediatric and adult physicians, alternating visits between the pediatric and adult sites, or having a dedicated nurse transition coordinator. The ability to structure a transition program depends on local factors such as patterns of referral, funding, reimbursement, nursing and allied healthcare support, and distance from tertiary care centers for patient travel. No data exist on the most successful way to transition adolescents and young adults to adult care, and thus no consensus has been developed to provide an “ideal model.”