Literature Review and Synthesis
Effective transition to adult-oriented care has been found to be challenging for patients, caregivers, and providers secondary to adolescent lifestyle changes, risk-taking behaviors, competing work or school demands, and less parental supervision. These challenges often take precedence over diabetes care (Peters et al., 2011). Patients and families desire a gradual transition process from pediatric-centered care to adult care, but all too frequently the transition occurs abruptly without adequate preparation (Busse et al., 2007; Hilliard et al., 2014; Reiss, Gibson, & Walker, 2005; Tuchman, Slap, & Britto, 2008). The recommendation is to introduce the transition by 14 years of age and to begin transition preparation at least one year before changing to adult services (AAP, AAFP, and ACP, 2011; Peters et al., 2011).. Time of transfer to adult care should be based on an adolescent's readiness and skill acquisition (e.g., ability to negotiate the adult health care system), not on a predetermined age (Reiss et al., 2005).
Fears and anxiety about the unknown, differences in the approach to care in adult settings, and sadness about leaving the pediatric provider all contribute to a patient's reluctance to transition (Bowen, Henske, & Potter, 2010; Kipps et al., 2002; Hilliard et al., 2014; Tuchman et al., 2008). Young adults often struggle to adjust to the increased level of autonomy expected of patients in the adult health care setting (Wood et al., 2014). Although patients and their families desire guidance when transferring to adult diabetes teams, patients often do not receive recommendations or introductions from their pediatric providers (Busse et al., 2007; Garvey et al., 2012; Hilliard et al., 2014).
Transition of care challenges reinforce why adherence to medical supervision around the time of transfer to adult care is not optimal for many youth with diabetes. In a retrospective study conducted by Kipps et al. (2002), it was observed that clinic attendance rates for patients with Type 1 diabetes declined to 61% after transition to adult care, especially for those with worse glycemic control. In the multicenter Search for Diabetes in Youth study, participants were found to have 2.5 times higher odds of poor glycemic control after transition to adult care compared with those continuing to receive pediatric health supervision (Lotstein et al., 2013). A large Canadian retrospective study found that in the 2 years after transition to adult care, rates of hospitalization for acute hyperglycemia increased from 7.2 to 9.5 cases per 100 patient–years (Nakhla, Daneman, To, Paradis, & Guttmann, 2009).
Although a small sample size was used, findings from Cadario et al. (2009) show that patients with a structured diabetes transition program had significantly less time between the last pediatric visit and the first adult visit and better clinic attendance compared with those without coordinated transition of care. Cadario et al. also found that the group with an organized transition process had a significant decrease in hemoglobin A1c (HgA1c) levels, suggesting that coordinated transition of care can contribute to improved glycemic control.
Although there are no known published randomized controlled trials evaluating diabetes transition of care models (Hanna & Woodward, 2013), available evidence suggests that early planning, provider continuity, and intense care coordination can result in increased patient satisfaction, improved clinic attendance, better glycemic control, and decreased hospitalization rates (Cadario et al., 2009; Kipps et al., 2002; Nakhla et al., 2009; Vidal et al., 2004). Garvey et al. (2012) found that patients with strong transition preparation were significantly less likely to report a gap of greater than 6 months between pediatric and adult clinic visits, and thorough transition preparation correlated with better patient satisfaction. In a study of adolescents with Type 1 diabetes, participants emphasized the importance of early transition preparation and developmentally appropriate care (Hilliard et al., 2014).
In summary, the evidence supports the need for a structured framework for transition of care for adolescents with Type 1 diabetes to adult-oriented care. Adolescents and their families prefer a gradual and coordinated transition to reduce fears and anxieties. Additional guidance is required to increase adolescent autonomy in their Type 1 diabetes management. There is limited literature on successful models for the transition of adolescents with Type 1 diabetes to adult-oriented care.
J Pediatr Health Care. 2017;31(2):215-221. © 2017 Mosby, Inc.