Studies of transition readiness in young adults with inflammatory bowel diseases (IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their IBD. This can lead to worsening disease activity and increased healthcare utilization. It is crucial that pediatric IBD healthcare providers prepare young adults, but it is unclear how well they utilize transition readiness tools. To address this, the Transition of Care Innovation Community within ImproveCareNow, a pediatric IBD quality improvement collaborative, designed a survey to identify and measure how pediatric IBD centers assess transition readiness and implement the transfer of care.Methods:
Pediatric gastroenterology centers participating in ImproveCareNow were invited to complete a 27-item electronic survey via REDCap. One medical provider completed the survey for each institution. The chi-square test was used for statistical analysis and P < 0.05 was considered statistically significant.Results:
Of the 75 ImproveCareNow participating centers, 49 centers (65%) completed the survey. Seventeen of 49 centers (35%) used a transition checklist with their IBD patients. The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) transition checklist and the Transition Readiness Assessment Questionnaire (TRAQ) were the 2 most common transition tools used. Sixty-five percent of centers using a transition checklist start to administer the checklist to patients between 12 and 14 year old. In the centers with a formal IBD clinic, 43% of centers used a transition checklist, compared with 24% of centers without an IBD clinic (P = 0.166). Of the 16 centers with a social worker and/or psychologist in their IBD clinic, 8 centers (50%) used a transition checklist, compared with 4 (33%) of the 12 centers without these providers (P = 0.378). Age was the most common factor (96% of centers) influencing when to transfer a patient to adult gastroenterology. In the process of transferring a patient from pediatric to adult gastroenterology providers, 73% of centers reported a hand-off of information at the time of transfer. Centers with an IBD clinic were more likely to report this hand-off than those without a formal IBD clinic (89% versus 52%, P = 0.004). An adult gastroenterologist was involved in a formal Transition clinic in 14% of center with an IBD clinic, compared with 5% of the centers without an IBD Clinic (P = 0.034).Conclusions:
Our survey of 49 ImproveCareNow centers is the first study to assess actual transitioning and transfer practices in pediatric IBD care. Centers with an established IBD clinic that also had a social worker and/or psychologist used a transition checklist more often than centers without these multidisciplinary resources. In addition, centers with an IBD clinic were more likely to utilize a formal transfer of care process. These findings support previous studies, which show that successful transition and self-management require a multidisciplinary approach to transition planning that includes behavioral medicine and social work.