Health Care Transition in Young Adults With Type 1 Diabetes

Barriers to Timely Establishment of Adult Diabetes Care

Katharine C. Garvey, MD, MPH; Howard A. Wolpert, MD; Lori M. Laffel, MD, MPH; Erinn T. Rhodes, MD, MPH; Joseph I. Wolfsdorf, MB, BCh; Jonathan A. Finkelstein, MD, MPH


Endocr Pract. 2013;19(6):946-952. 

In This Article

Abstract and Introduction


Objective: To examine barriers to health care transition reported by young adults with type 1 diabetes and associations between barriers and prolonged gaps between pediatric and adult diabetes care.

Methods: We surveyed young adults aged 22 to 30 years with type 1 diabetes about their transition experiences, including barriers to timely establishment of adult diabetes care. We evaluated relationships between barriers and gaps in care using multivariate logistic regression.

Results: The response rate was 53% (258 of 484 eligible subjects). Respondents (62% female) were 26.7 ± 2.4 years old and transitioned to adult diabetes care at 19.5 ± 2.9 years. Reported barriers included lack of specific adult provider referral name (47%) or contact information (27%), competing life priorities (43%), difficulty getting an appointment (41%), feeling upset about leaving pediatrics (24%), and insurance problems (10%). In multivariate analysis, barriers most strongly associated with gaps in care >6 months were lack of adult provider name (odds ratio [OR], 6.1; 95% confidence interval [CI], 3.0-12.7) or contact information (OR, 5.3; 95% CI, 2.0–13.9), competing life priorities (OR, 5.2; 95% CI, 2.7–10.3), and insurance problems (OR, 3.5; 95% CI, 1.2–10.3). Overall, respondents reporting ≥1 moderate/major barrier (48%) had 4.7-fold greater adjusted odds of a gap in care >6 months (95% CI, 2.8–8.7).

Conclusion: Significant barriers to transition, such as a lack of specific adult provider referrals, may be addressed with more robust preparation by pediatric providers and care coordination. Further study is needed to evaluate strategies to improve young adult self-care in the setting of competing life priorities.


The development of evidence-based paradigms for health care transition is critical for both pediatric and adult providers caring for patients with pediatric-onset chronic illness. Health care transition has been defined as "the planned, purposeful movement of young adults from child-centered to adult-oriented health-care systems".[1] A 2002 consensus statement from the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians emphasized the importance of a planned and facilitated health care transition for adolescents with special health care needs.[2] However, more recent guidelines cited a lack of significant progress in the intervening decade and restated the role of effective health care transition as a basic standard of high-quality medical care.[3]

The developmental stage from the late teens through the twenties has been defined as "emerging adulthood," a period characterized by many competing educational, social, and economic priorities.[4] In emerging young adults with type 1 diabetes, these competing priorities are compounded by relentless self-care requirements, and the transition to adult medical care adds yet another challenge.[5,6] Patients in this population are at risk for loss to follow-up and adverse health outcomes, including poor glycemic control, emergence of chronic diabetes complications, and premature mortality.[7–10]

For endocrinologists, type 1 diabetes is an important model for the study of health care transition, given the complex self-management and medical decision making required of patients and the importance of uninterrupted outpatient follow-up in preventing acute and chronic diabetes complications.[9,11] Furthermore, given the rising incidence of type 1 diabetes,[12–14] increasing numbers of adolescents will need to safely establish adult diabetes care.

The American Diabetes Association recently published expert consensus guidelines on health care transition for emerging adults with diabete,[5] but empirical data remain limited, particularly in the U.S., where there is no mandated transition age. Work in other countries has described gaps between pediatric and adult diabetes care,[15–18] decreased posttransition clinic attendance,[15,19,20] and patient dissatisfaction with transition,[15,19,21] but few studies have systematically examined the specific barriers to transition for patients with type 1 diabetes.

We recently published primary results from our survey of 258 posttransition emerging adults at a U.S. center.[22] Although 63% of patients reported feeling mostly or completely prepared for transition, only 49% received the names of specific adult providers and less than 15% had access to any transition intervention programs or written transition materials; a total of 34% experienced a gap >6 months between pediatric and adult care. Patients who felt mostly or completely prepared for transition had a lower likelihood of a gap >6 months between pediatric and adult care (adjusted odds ratio [OR], 0.47; 95% confidence interval [CI], 0.25–0.88). However, although transition preparation was associated with decreased gaps in care, it was not associated with improved posttransition glycemic control.

To design interventions that will strengthen transition preparation, facilitate the establishment of adult diabetes care, and ultimately improve glycemic control in young adults, it is imperative to better understand young adults' perspectives regarding specific barriers to transition and their relative importance. Therefore, our objectives were to assess the barriers reported by young adults in our transition survey sample[22] and to examine associations between transition barriers and gaps between pediatric and adult care.