Barriers to Care and Suggestions for Improving Transition
There were several common challenges identified by participants. All programs reported that balancing school and work along with regular medical appointments and self-care is challenging for many young adults (Table 2, Quote 6). The fact that young adults often have unstable living arrangements, e.g., moving back and forth for college or work, also caused challenges for some patients. It was felt that there is a decreased access to care for young adults, with shorter appointment times and no longer having access to a 24-hour dedicated diabetes help line maintained by the children’s hospital. Young adults develop a sense of familiarity and comfort with their care team and their facility which they did not have with the adult clinic (Table 2, Quote 7). Providers reported difficulty finding adult physicians accepting new patients or adult care providers being “reluctant” to accept young adult patients with diabetes, perhaps because of limited staffing, perceived complexity of the patients’ condition, or resources. Patient transfers between regions add additional challenges because pediatric providers lack established connections with adult physicians in those areas, meaning the task of finding an adult physician often falls solely on the patient. Adult providers felt that many young adults were not adequately prepared for the transition to adult care.
In terms of suggested improvements, there was a clear divide between participants in the three mostly rural regions and Eastern Health. Participants from the other regions reported being mostly comfortable with their current transition practices. Their suggested improvements included more shared educational resources and possibly expanding the role played by primary care physicians (Table 2, Quote 8). Other participants felt that many primary care physicians faced barriers to increasing their involvement in type 1 diabetes management including short appointment times, appropriate levels of remuneration as well as a lack of experience with insulin pumps and other newer diabetes related technologies. Expanding the role of primary care physicians would require that patients have a primary care physician and that the scope of this role is appropriate (Table 2, Quote 9).
Participants from the Eastern Health region suggested that a more formal transition process needs to be implemented. This new program should include an assessment of young adults’ knowledge about diabetes management; educational review sessions to ensure that all patients have the same diabetes management skills; and an opportunity to meet the new adult team and tour the adult facilities before their first appointment (Table 2, Quote 10). It was also emphasized that the transition program should start early, around ages 15-16 (Table 2, Quote 11). Many participants suggested that the structure of the formalized transition should include a transfer clinic, which would be a clinic appointment dedicated to preparing patients for their transfer into adult care. The adult clinics to which patients are transferred could providing young adults with a welcome letter with details about the care team, clinic procedures, parking and other information.