Case 16 Discussion Part 1 – Framework for an effective transition
Case continues after this page
Transitioning and ultimately transferring patients from pediatric to adult GI clinic is best done as a gradual and planned process, especially for patients with complex chronic illness. Transition of care is defined as the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems (Blum RW et al., J Adolesc Health. 1993). This ultimately culminates in the transfer of care, which is defined as the planned movement of patients and their medical records from one provider to another at a distinct point in time (Trivedi I et al. Gastroenterol Res Pract. 2015). There are multiple guidelines and recommendations that describe structured transition models (Baldassano R et al. J Pediatr Gastroenterol Nutr. 2002; Leung Y et al. Inflamm Bowel Dis. 2011; Elli L et al Dig Liv Dis 2015; Brooks AJ et al Gut. 2017; van Rheenen PF et al. J Crohns Colitis. 2017; Shapiro JM et al. Clin Gastroenterol Hepatol. 2020). A variety of structured transition programs have been described but there is currently no uniformly adopted best practice.
The core elements include education, assessment, patient and programmatic support, and a gradual process rather than abrupt transfer (Menon T et al. Am J Gastroenterol. 2019). Structured transition programs have been reported to improve confidence, knowledge about IBD and its treatment, self-efficacy, medication adherence, clinic attendance, and disease-related outcomes (Campbell F et al. Cochrane Database Syst Rev. 2016; Erös A et al. Inflamm Bowel Dis. 2020; Cole R et al. J Adolesc Health. 2015; Otto C et al. J Pediatr Nurs. 2019). Despite evidence supporting structured transition programs, many emerging adults do not undergo a formal transition process and are less satisfied with the continuity of their care (Timmer A et al. PLOS One. 2017).
The process of transition begins in early adolescence (ages 12-14), when pediatric providers introduce the idea of transition, establish goals, and set expectations associated with the eventual shift to an adult care model (Afzali A et al. World J Gastroenterol. 2017). This process usually involves seeing adolescent patients without their caregivers as well as formulating a written plan. The goal is to promote self-advocacy, self-efficacy, and self-management skills over time. For example, patients should understand their illness and treatments, and they should feel comfortable contacting their care team to manage appointments, tests, medication refills, and any change in symptoms. Transition readiness can be assessed using a variety of instruments, such as the Transition Readiness Assessment Questionnaire (TRAQ) (Wood DL et al. Academic Pediatrics. 2014).
When patients are ready for transfer, they identify an appropriate adult IBD provider. Ideally transfer occurs with one or more shared clinic visits arranged with the patient, pediatric providers, and adult providers. Joint clinic visits with pediatric and adult care teams are highly valued among patients, and they can build confidence in the new care team and ease some of the anxiety associated with transfer (Dabadie A et al. Gastroenterol Clin Biol. 2008). The pediatric team prepares detailed medical records summarizing the patient’s history and treatment. Transition coordinators can also help facilitate scheduling, troubleshoot barriers, and advocate for transitioning patients as they engage with the adult clinic (Menon T el al. Am J Gastroenterol. 2019). Ongoing communication between pediatric providers and adult providers is key for a successful transition, especially since young adult patients may continue to reach out to pediatric providers for advice and guidance. Ongoing quality improvement efforts can further enhance the overall process.
Useful links:
- North American Society For Pediatric Gastroenterology, Hepatology & Nutrition transition checklist https://www.naspghan.org/files/documents/pdfs/medical-resources/ibd/Checklist_PatientandHealthcareProdiver_TransitionfromPedtoAdult.pdf
- Transition Readiness Assessment Questionnaire (TRAQ) https://www.etsu.edu/com/pediatrics/traq/
- Patient-facing Doc4me application for selecting adult IBD providers http://www.doc4me-app.com/