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.