How to transition adolescents with diabetes from pediatric to adult care

A Canadian study has found that there are huge gaps in care for patients with diabetes transitioning from adolescent to adult care, and that pediatricians should offer more education to make the process go smoother.

The study, published in BMJ Open Diabetes Research and Care, investigated the transition process during the high-risk period of adolescence to adulthood. This transition is often marked by inadequate medical follow-up, poor self-management, and an increased risk of adverse events.

The period between ages 18 to 25 years can be a trying time, according to the research team, because patients are in a vulnerable stage wherein autonomy and self-identity are still developing. Patients with diabetes have added stress because of the daily demands of their disease and the necessary transition from care managed in a pediatric setting to an adult setting, the report notes.

“The transition to adult care occurs at a point in life concurrent with numerous physiological and psychosocial changes, including a deterioration in glycemic control, decreased adherence to self-management tasks, and to clinic attendance, as well as an increased risk of adverse outcomes,” the researchers note, adding that patients often feel abandoned or uneasy during this transition process. This may result in increased risk, particularly when it comes to compliance with new regimens and provider recommendations.

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The study references data presented in the SEARCH for Diabetes in Youth Study that found young adults were nearly 3 times more likely to have poor glycemic control during this transition period than those who remain in pediatric care. Careful planning is required to avoid negative outcomes during the transition process, with the ultimate goal being to provide coordinated and uninterrupted care that meets the patient’s developmental abilities.

The American Diabetes Association has drafted recommendations for this transition period, and other pediatric groups have jointly issued similar guidelines. The basis of these recommendations include creating a transition policy; assembling a transitioning youth registry; offering transition readiness and planning; having a plan for transfer of care; and taking steps to ensure transitions have been completed.

The researchers note that fewer than 15% of young adults receive written transition care, or even have a specific dialogue about transitioning to adult care with their pediatric provider. In fact, the study notes that few diabetes centers have structured transition programs.

For the report, researchers interviewed healthcare providers at 12 diabetic care centers about transition strategies and structures, as well as patient perceptions about the transition process and barriers to care.

Three of the centers (25%) reported having formal and structured transition plans in place, according to the report, and physicians within those centers perceived a smoother transition and better information sharing when referrals were made from pediatric providers from within the same center. Discussions about transitioning to adult care typically begin when the patient is aged around 12 to 14 years, but researchers also noted that most facilities created transition plans without involvement from patients or their families. Few facilities had special programs for patients with developmental or intellectual deficits.

Seven of the centers investigated had uniform transition policies based on patient age (often at 18 years), and the remainder offered flexible transition times based on the preference of the patient. Four of the facilities continued care for an extended period because of the use of insulin pump therapy and a perception that adult care centers may be unwilling to provide care to those patients. Just 1 center had a registry for transitioning young adults to aid in the process.

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Overall, there was little formality to the transition process. Just 3 facilities used structured transition readiness and self-care skills assessments and regularly updated patient progress. Other facilities may have done these things, but did so informally and without a structured plan, the report notes. Follow-up after transition was also lacking, with only 2 facilities arranging posttransfer assessments.

Barriers to the transition process included a lack of adult care providers-half of the facilities reported an insufficient number of adult providers-and less flexibility in adult care scheduling. Young adults transitioning from pediatric care to adult care also reported struggling with new and added self-care responsibilities, and adult care providers did not seem to understand or support these patient struggles, according to the study.

“There was a perception that the quality of pediatric care was better than adult care,” the research team notes. “There was a perception that adult care providers wrongly expected emerging adults to be fully autonomous by the age of 18 years, irrespective of the patient’s developmental stage,” they write. “As a result, if a patient was not fully autonomous or responsible for his or her care, pediatric providers perceived that there were no specific strategies or approaches in place in the adult care setting for support.”

Follow-up after transition was also lacking, with many facilities reporting a lack of staff to manage both transitions and follow-up. Providers also reported that patients who had to start seeing a provider in a new region also had poor follow-up when compared with those who were able to stay within the same facility or region.

The most successful programs overlap pediatric and adult care, and transition success was most often measured by a combination of patient satisfaction and regular follow-up.

Despite the fact that there were few formal transition processes in place, the pediatric providers polled in the study didn’t indicate that the problem was in their practices.

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“Pediatric providers did not perceive that their current transition practices at the pediatric care level were unsatisfactory and, in fact, providers felt that barriers to transition care were mainly within the adult care setting,” the report says. “This is in contrast to several studies of emerging adults who have reported a lack of purposeful transition preparation and dissatisfaction with the transition process within the pediatric care setting. . . . The discrepancy between what pediatric providers perceive as adequate transition preparation and what they reported being done for transition preparation is concerning.”

The difference in the perceptions of pediatric providers and their patients may indicate a lack of knowledge, according to the study, which notes that 68% of US pediatricians say they have not received adequate training on transitioning diabetic care.

The authors write that skills, self-care, and readiness assessments are key to a successful transition, along with early discussions and a structured plan for making the change. “Our findings highlight the need for a more structured approach to transition care. When emerging adults are supported through the transition period, clinic attendance, adverse outcomes, and loss to follow-ups improve,” they say.

The study recommends that pediatricians evaluate their current practices for transitioning diabetic patients to adult care. Assessment tools including the Transition Readiness Assessment Questionnaire (TRAQ) or the Am I ON TRAC for Adult Care (ON TRAC) Questionnaire can help providers prepare patients for transition, the study suggests. The research team also recommends increased collaboration between pediatric and adult providers to develop a better system for transitioning young adults, with structured approaches backed by improved education and training for pediatric providers.