Discussion
We reviewed the transition experience of young adult patients with type
1 diabetes across the province of NL. We found that over a six-year
period, only 93 patients with type 1 diabetes transferred into adult
care. For those who did, there was an increased in diabetes-related
hospitalizations in the three-year period after they transition compared
to the period before. No structured transition program was identified
within any of the province’s four health regions. Regardless, staff in
rural regions felt mostly comfortable with their current transition
practices due to the small population of patients transitioning each
year, continuity in nursing and other non-physician providers, and staff
familiarity with these patients. Staff in the largest health region
identified the need for more structured transition processes.
Participants also recommended starting early with preparing and
educating patients, fostering independence and responsibility in the
young adults, and expanding the involvement and education of family
physicians in rural areas with insufficient access to specialist
physicians.
Our study is one of the first to detail the processes by which rural
health regions transition patients with diabetes into adult care. Rural
areas are known to have less access to health care services, including
diabetes specialists.19 The lack of access to diabetes
specialists may increase the difficulties rural patients have in
transitioning to adult care and require different types of interventions
to support transition than those appropriate for urban
areas.20 Reviewing the patient cohort, we identified
the small number of patients (approximately 10 over the four health
regions) who transition annually in rural areas, which can make it
difficult to justify and maintain a structured diabetes program. While
we did find issues for young adult patients in rural areas related to
them having to move away for work, there also appeared from the
providers’ perspective to be advantages to living in rural communities,
due to the level of personal connection patients can develop with their
care teams. The continuity in non-physician providers can play a role
insuring that patients are not lost to follow-up or are reconnected to
care if they leave the region. We did not evaluate patient perspectives,
which could have highlighted other issues related to accessing care for
rural patients with type 1 diabetes.21
We found that there is variation to the type of physician to whom
patients transition, e.g., internist, family physician. Similar
variation in type of adult provider to whom patients transition is also
seen in other disease areas.22 In a recent review of
diabetes centres in Ontario, Canada, we found that 42.9% changed to an
adult endocrinologist, 25.8% changed to an internist or primary care
physician, 27.4% stayed with a pediatric physician, and 3.9% had no
adult diabetes care.23 The presumption is that more
specialist care may be preferable, but there is little evidence to
support this; and guidelines focus on the ability of providers to
connect patients to other services rather than their
speciality.24 Our finding highlight, however, some of
the variation occurring related to access to specialists for young
adults even within the same country. There was some disagreement amongst
participants about the role primary care physician should play in
supporting the transition of patients with type 1 diabetes. Transition
care guidelines recommend integrating primary care providers into the
transition process, but there is no guidance as to how this can be done
most effectively21 and more work is need to insure
that primary care physicians accepting young adult patients with chronic
conditions are appropriately supported.25,26
The approached we used combined reviews of administrative data with
qualitative interviews to develop an understanding of how care is
currently being delivered. We found this approach to be effective in
focusing discussions on how to better structure and improve clinical
care for this population. One of the reasons for focusing on NL was that
it had high rates of type one diabetes. There was an assumption by some
of the research teams that the high rates would result in a high number
of patients transitioning out of care annually. While the NL rates of
type 1 diabetes in Newfoundland are high, given its small population and
the fact that diabetes type one diabetes is still a fairly rare
condition, the absolute total patient numbers remained quite small,
particularly in rural regions. Having a combined picture of the number
of patients and the current processes for transition allowed us to focus
interventions on addressing the needs identified by the specific problem
program. In the rural areas, we identified the need for additional
education resources and which we have identified and sent to these
programs. For the Eastern Health region, which identified the need for a
transfer clinic, we are currently working with their program to help
develop and evaluate this clinic. Overall, having the data and
understanding of current processes provided us a very good basis for
focusing discussions on how to improve care and it could be approach
used in other jurisdictions.
This study has a number of limitations. We hoped to include young adult
patients who had recently transitioned, but after numerous attempts and
invitations, no patients consented to participate in this study.
Similarly, no family physicians involved in providing care to young
adult diabetes patients participated despite numerous interview
requests. The Eastern Health interviews coincided with the planning for
a pilot transfer clinic and therefore many of the participants focused
their suggestions for improvements around elements that were planned to
be a part of this pilot project. Because of the small number of patients
involved and restrictions related to ensuring privacy, we were unable to
evaluate whether there are differences in patient outcomes between urban
and rural areas. Given the potential differences in these patients’
access to care, potential differences in patient outcomes, e.g., in
terms of diabetes-related hospitalizations, could be an interesting
question to pursue in future research.