Significant and persistent gaps exist in the services that help young patients with type 1 diabetes transition from pediatric to adult care, a new study suggests. The findings highlight a need for specific interventions to ease the transition process.
In-depth interviews with clinicians from 12 of the 15 pediatric diabetes centers in Quebec revealed “a near-universal absence of formal transition-care readiness and planning across [the centers], whether university based or community based,” Meranda Nakhla, MD, from the Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, and colleagues write in BMJ Open Diabetes Research & Care.
“We found there were huge gaps in transition-care practices such as the lack of a standardized transition-care policy, limited communication between the pediatric and adult healthcare settings, and an absence of structure for pediatric-care providers to implement transition-care practices,” Dr Nakhla, a pediatric endocrinologist at the Montreal Children’s Hospital of the McGill University Health Centre, explained in a press release.
This is despite the fact that, in 2002, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians published joint consensus guidelines emphasizing the importance of transition care as a component of good medical care.
The authors recommended several ways in which clinicians and practices can address these shortcomings, including development of a standard transition-care policy; starting discussions on the subject when the patient reaches early adolescence; regularly assessing the patient’s transition readiness and self-care skills; preparing a medical summary for the adult-care provider; and developing a transition-care program for the practice.
People with other chronic childhood diseases, such as cystic fibrosis or kidney disease, experience similar complexities associated with the transition from pediatric to adult care and may also benefit from a more standardized approach, Dr Nakhla said.
A Vulnerable Time
Patients usually change from pediatric to adult care between the ages of 18 and 25 years, which may exacerbate the physiological and psychosocial upheaval associated with adolescence, the authors write.
Nevertheless, there is evidence that fewer than 15% of young adult patients with diabetes in the United States receive specific instructions on making the transition, and a survey of diabetes centers in 36 countries “found that most centers did not have a structured transition-care program.” The authors conducted this survey to learn more about the gaps in transition care from the pediatric providers’ perspective.
Between June and November 2015, the researchers interviewed the responsible nurse, pediatrician, or pediatric endocrinologist from 12 of the 15 pediatric diabetes centers across Quebec, including four academic and eight community centers. The telephone interviews consisted of two parts: the first part inquired about implementation of the six core elements of a good transition program developed by Got Transition, a US-funded program developed using recommendations from the 2002 guideline. The second part consisted of open-ended questions regarding the optimal ways of transitioning care and measures of successful transition.
Of the 12 centers, only three (25%) had a formal policy on transitions. None had included patients or parents when developing those policies, and none made accommodations for patients with intellectual challenges. Seven centers (58%) required transitioning at 18 years of age, while the others had more flexible policies that took the patients’ wishes into account. “Only one center (8%) had a transitioning youth registry to aid with transition planning and monitoring transition progress,” and only three (25%) assessed patients’ readiness to make the change and regularly documented their progress toward that goal, the authors write.
Several major themes emerged from the second part of the interviews. Eight of the 12 centers (67%) relied on within-center referrals, on the assumption that that would allow for a smoother transition of care. The major barriers to successful transition identified by the interviewees included “lack of adult providers, less flexibility in scheduling adult-healthcare appointments, patients’ struggles with multiple new responsibilities, and adult providers’ lack of appreciation of these struggles.” Lack of time and resources for planning the transitions also was cited.
Another theme was how to measure a successful transition. HbA1c levels were not considered a good measure, “as there were many other factors that could affect it other than the transition to adult care.” Instead, the clinicians named patient satisfaction and relatively short intervals between clinic visits as better indicators of success.
The optimal transition model was thought to include overlap between pediatric and adult care. One major drawback cited by the participants was a lack of assistance for patients who moved to a new location during the transition period.
Study limitations include limiting the interviews to clinics in Quebec, focusing only on the pediatric provider’s perspective, and the use of telephone rather than in-person interviews.
“Despite over a decade of increasing awareness of the importance of transition care, significant and persistent gaps in transition-care processes were reported by pediatric-care providers in Quebec,” the authors conclude. They recommend that pediatric and adult practices alike review their approach to these transitions, make greater use of the components developed by Got Transitions, and offer pediatric patients more help in finding adult practitioners willing to work with them.
The authors disclosed no relevant financial relationships.
BMJ Open Diab Res Care. 2017;5:e000390. Article
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