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.