This study offers a paradigm for assessment of the health care transition experience and post-transition health care of young adults with type 1 diabetes. Our study complements prior studies elucidating key challenges in type 1 diabetes transition. We contribute the perspective of patients previously cared for at a pediatric diabetes clinic in a US tertiary pediatric center.
In this sample, post-transition health care delivery reports were promising in that the vast majority of respondents were receiving regular adult diabetes care, with 75% reporting at least two diabetes visits in the previous year. These rates of follow-up are significantly higher than those published in observational studies in Europe,15
but analogous posttransition data for comparison are limited in the US.
Interestingly, the high rates of follow-up reported in this sample occurred despite lower reports of transition preparation. For instance, less than half of patients received specific adult provider referral names or contact information, and yet the vast majority of respondents (>80%) felt that these were important aspects of transition. Our findings are consistent with other reports of nonpurposeful transitions in type 1 diabetes.13
More broadly, deficits in preparation for transition have been described in large national surveys of young adults with a mix of chronic health conditions,27
as well as in patients with single diagnoses associated with intensive daily self-management requirements, such as cystic fibrosis29
and complex health screening recommendations, such as Turner syndrome.30
Gaps between pediatric and adult diabetes care may be detrimental to long-term diabetes outcomes, especially given the known associations between infrequent clinic follow-up and the occurrence of acute and chronic diabetes complications in youth with type 1 diabetes.9
One quarter of our respondents reported a gap of more than six months between pediatric and adult care, a figure consistent with several other studies.14
Respondents with fewer than three pediatric visits in the year prior to transition and those who cited relocation/moving as the main impetus for transition were more likely to report gaps in care. Transition coordination programs in Canada and Australia have shown reduced care gaps for patients with type 1 diabetes.23
Our findings suggest a possible role for targeted transition care referrals and tracking for those patients who are relocating. In particular, our high survey nonresponse underscores the potential important role of tracking programs to ensure follow-up of patients once they leave their pediatric care.
A priori, we had planned to examine relationships between transition characteristics (preparation, gaps between pediatric and adult care) and current adult care patterns (in particular visit frequency). However, because the majority of respondents in our sample were receiving regular diabetes care with at least two visits in the past year as per American Diabetes Association guidelines, we did not have sufficient numbers of respondents to explore this question fully. We found that patients identifying an adult endocrinologist as their main diabetes provider were significantly more likely to report regular diabetes clinic visits compared with those identifying general internists or others as the main diabetes provider. This finding did not translate into differences in screening test patterns or reported glycemic control, although small numbers may have limited our ability to detect differences in these outcomes.
Our findings regarding provider characteristics are consistent with the multicenter, population-based SEARCH for Diabetes in Youth Study, which showed that 70% of 363 subjects ≥18 years of age (mean age 21.2 ± 2.3 years) were seeing a diabetes specialist (25% reported a pediatric endocrinologist and 45% an adult endocrinologist) while 17% were seeing a generalist. Subjects seeing a generalist were significantly less likely to report receipt of recommended diabetes screening tests compared with those seeing an endocrinologist.34
Variation in the nature and quality of diabetes care from different types of adult providers requires further study, and transition preparation may need to be tailored to the type of adult provider a patient will be seeing following transfer. Additionally, continuing medical education about young adult diabetes care should be targeted to general internists and family physicians as well as adult endocrinologists.
Several limitations of this study must be noted. The cross-sectional design prevents assertions about causality. The survey instrument was new, which could impact the validity of responses, although we developed the items based on literature review, qualitative data from focus groups, and expert input. There is evidence in the literature of concordance between self-reported survey data and medical record data for outpatient diabetes care,35
but our self-reported survey data are nonetheless potentially subject to recall and social desirability biases. Further, the study design could not include any validation of respondent data from pediatric or adult medical records.
Nonresponse bias is also a concern; the response rate was suboptimal, although comparable at 32% with other post-transition diabetes studies.16
While the age and gender distribution of the nonrespondents and respondents was similar, no other data were available for nonrespondents. The respondent sample was further impacted by the use of the last known mailing address in recruitment, which may have biased the sample towards people still connected with medical care near their childhood homes. Finally, the small sample size limited our ability to conduct multivariable analyses and to control for confounders such as socioeconomic status. Despite these limitations, our findings are consistent with previous publications and provide contemporary information from emerging young adults who transferred from pediatric care solely within a children’s facility to adult care providers.
Our respondent sample was, on average, a highly educated, relatively advantaged group of patients, most of whom were currently receiving regular diabetes care. As in other studies of youth with type 1 diabetes, health-related quality of life was generally high.38
Many of our observations are encouraging regarding the follow-up care of youth with type 1 diabetes following their transfer to adult providers, but given the relatively low response rate, our findings may represent a “best-case” scenario. All of the respondents had some type of health insurance, due to extremely high rates of health insurance in Massachusetts that are not representative of the current landscape throughout the US. Therefore, we were not able to evaluate associations between health insurance and transition care utilization. Previous research has pointed to disparities in the transition process for youth with childhood-onset chronic illness from more diverse patient samples, including the underinsured.40
The challenges in transition identified in this study would likely be magnified in more diverse young adult populations, and this remains a key area for future research.
Finally, 28% of our surveys were returned to sender, which represents an important finding. It is difficult to track young adults in a mobile society after they leave a pediatric center, and, as other studies have found, this difficulty increases with each passing year after transition.37
This is not diabetes-specific, and is an area of concern for the care of emerging adults. The US health care transition consortium “Got Transition” has put forth six core practice elements (www.gottransition.org
) based on expert consensus, one of which is clinic-based registries to follow transitioning youth. Our results support the need to create patient registries to track the follow-up of transitioning patients as well as the utility of prospective research to facilitate understanding of transition outcomes.41