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. Author manuscript; available in PMC: 2025 Aug 20.
Published in final edited form as: Acad Pediatr. 2022 Sep 5;23(4):737–746. doi: 10.1016/j.acap.2022.08.012

Indicators of Healthcare Transition Progress among College Youth with Type 1 Diabetes

Rebecca K Tsevat d, Elissa R Weitzman a,b,c, Lauren E Wisk a,b,d,e,1
PMCID: PMC12363386  NIHMSID: NIHMS2101728  PMID: 36067922

Abstract

Objective:

Adolescents with chronic diseases must navigate changing healthcare needs in college and beyond. This study examined the ability of college youth with type 1 diabetes (T1D) to achieve transition milestones and ascertained sociodemographic predictors of a successful healthcare transition (HCT).

Methods:

College youth with T1D were recruited via social media and direct outreach to participate in a web-based study, during which they answered questions about the HCT process. Descriptive statistics and multivariable regression were used to evaluate HCT measures as a function of sociodemographic variables.

Results:

Nearly two-thirds of participants (N=138) had discussions with their provider about changing healthcare needs (65.9%) and transferring care to adult physicians (64.5%); less than one-third (27.9%) discussed obtaining health insurance as an adult. Females were more likely than males to discuss transitioning to adult providers (70.3% vs. 40.7%, p <0.01). Those covered on a parent’s insurance (vs. other) plan were more likely to receive help with finding adult providers (79.3% vs. 44.4%, p=0.04) but less likely to discuss how to obtain health insurance (25.0% vs 61.1%, p<0.01). These differences persisted after adjustment.

Conclusions:

Improvement is needed with regard to college youth with T1D becoming autonomous managers of their own care. Gaps were found in their experiences of discussing changing healthcare needs, locating adult providers, and obtaining health insurance—especially among those who were younger, male, and not covered under parental insurance. Efforts to improve the HCT process should focus particularly on these subgroups to advance healthcare delivery in this population.

Keywords: Transition of care, Adolescent, Young Adult, Type 1 Diabetes

Introduction

Transition from pediatric to adult-centered care is a necessary process for all adolescents and young adults (AYA), and the goal is to provide healthcare that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive.1 While this process may be smooth for some, it can be complex and challenging for others—particularly those with chronic medical conditions who must navigate evolving healthcare needs amidst profound social and developmental changes.2–6 AYA transferring to adult-centered care often feel a sense of sadness and abandonment during the transition,7–9 and they express reservations about facing the unknown, trusting new providers, and assuming greater ownership of their care.10 The transition period is also a time of profound physical vulnerability, as it has been associated with health deterioration for those with chronic conditions.9,11–13 Although a smooth transition process may help mitigate these vulnerabilities, the majority of US youth are not receiving adequate transition preparation; current estimates reveal that 83% of youth with special healthcare needs (SCHN) and 86% of youth without SCHN do not meet the national healthcare transition (HCT) performance measure.14

Type 1 diabetes (T1D) is one chronic disease that can be associated with significant health risks during the transition period. Up to 50% of young adults with T1D develop diabetes-related complications in their twenties.15,16 Additionally, experiencing care gaps during the transition age increases the risk of diabetes-related hospitalizations, ketoacidosis, and death.9,17–18 Ensuring a smooth transition is important not only because it may reduce these complications, but also because as AYA gain independence in diabetes management, the support of diabetes team members has been shown to influence compliance with self-care.19–20 Many physical, psychosocial, and practical barriers to transitioning effectively between pediatric and adult diabetes care have been identified,13 but less is known about how this process is affected by sociodemographic variables in this population. One study evaluating transfer of care to adult providers in AYA with T1D showed higher rates of transfer among older patients and lower rates among those with higher parental education than their counterparts.13 Another study of youth with and without chronic conditions demonstrated that transfer occurred at younger ages for those from higher-income neighborhoods than those from lower-income neighborhoods.21 Among youth with SHCN, disparities in transition preparation and outcomes in those from racial/ethnic minority backgrounds have been noted22; nevertheless, one national survey of young adults did not detect associations between transition-related outcomes and identifiers such as gender, age, and race.23 Accordingly, additional studies investigating sociodemographic predictors of transition-related outcomes in AYA with chronic diseases are needed.

In this study, we sought to evaluate achievement of transition milestones among college youth with T1D, per established components of Got Transition’s Six Core Elements of Healthcare Transition24: the receipt of education to promote transition readiness, the development of an HCT plan with providers, and the transfer of care from pediatric to adult practitioners. Additionally, we ascertained sociodemographic predictors of a successful HCT as defined by completion of these milestones. We hypothesized that participants who were older and covered on a parent’s insurance plan would be more likely to achieve these milestones than their counterparts.

Methods

Participants

College youth with T1D were recruited into a pilot trial designed to evaluate competing versions of a novel educational intervention targeting alcohol use-related knowledge, attitudes, and behaviors.25 Participants were recruited from two diabetes advocacy groups via social media platforms, direct e-mail outreach, and a website banner. The website linked to a Research Electronic Data Capture (REDCap) survey hosted on secure servers and was accessible by phone, tablet, or computer. After online informed consent, respondents completed a series of questions assessing participation eligibility. Criteria for inclusion were that participants were 17–25 years old, had received a diagnosis of T1D, and were currently attending or enrolled in a college or university. Additional details of recruitment procedures and study implementation have been published.26 The study was approved by the Institutional Review Board.

Measures

Participants meeting inclusion criteria were directed to complete a baseline survey soliciting sociodemographic data (age, sex, race/ethnicity, health insurance source, parental education, year in school, and region of college or university attended. Participants were prompted to identify their main diabetes care provider(s) (select all that apply: pediatric endocrinologist, adult endocrinologist, general pediatrician/nurse practitioner, general adult doctor/nurse practitioner, or other); the last time they saw their diabetes provider, based on the ADA’s recommendation for quarterly follow-up27 (in the last 3 months, 4–6 months ago, 7–11 months ago, 1 year ago or more); the location of their diabetes provider (on campus/near college, at home/near parents, or other); and their satisfaction with their diabetes provider on a 10-point Likert scale, with (1) representing highly dissatisfied and (10) representing highly satisfied. Provider location and main diabetes care provider were combined into a single variable (provider composite) using factor analysis, with higher scores corresponding to higher likelihood of seeing adult providers.

Participants were also asked about HCT milestones using questions derived from the National Survey of Children with Special Health Care Needs.28 Specifically, the survey assessed whether prior healthcare providers had talked with participants about how their healthcare needs might change as they grew older; whether providers had discussed how to manage diabetes and receive care while at college; whether pediatric providers had discussed transitioning care to adult providers; and whether providers had discussed how to obtain or keep health insurance coverage. Those who answered ‘yes’ to any of these questions were prompted with additional questions inquiring about whether providers had helped them develop plans to address the respective issues. Those who answered ‘no’ were asked if discussions about the respective issues would have been helpful.

Analysis

Quantitative analyses were performed using SAS 9.4 (Cary, NC), and statistical significance was considered at p<0.05. All individuals who completed the initial survey were included in these analyses (N=138). Descriptive statistics and multivariable regression were used to evaluate HCT milestones as a function of sociodemographic variables while adjusting for confounders. Adjusted models controlled for age, sex, race/ethnicity, parental education, health insurance source, and provider composite score. Age and provider composite were treated as continuous variables, while all other identifiers were treated as categorical variables.

Results

Study sample (Table 1)

Table 1:

Sociodemographic Variables

N %
Total 138
Age (years)
 Mean 20.49
 Standard Deviation 1.53
Sex
 Female 111 80.4%
 Male 27 19.6%
Race/Ethnicity
 White, non-Hispanic 114 82.6%
 Hispanic or non-white 24 17.4%
Parental education
 Less than bachelor degree 43 31.2%
 Bachelor degree or higher 95 68.8%
Health insurance
 Insurance from parent 120 87.0%
 Other insurance plan or uninsured 18 13.0%
Year in school
 Freshman or sophomore 61 44.2%
 Junior or senior 63 45.7%
 Graduate school or other 14 10.1%
Region of college/university
 Northeast 38 27.5%
 Midwest 35 25.4%
 South 51 37.0%
 West 10 7.2%
 Outside the US 4 2.9%
Main diabetes care provider(s) *
 Pediatric endocrinologist 52 37.7%
 Adult endocrinologist 85 61.6%
 General pediatrician/NP 8 5.8%
 Adult physician/NP 14 10.1%
 Other 2 1.4%
Last contact with diabetes provider
 Last 3 months 87 63.0%
 4–6 months 40 29.0%
 7–11 months 7 5.1%
 1 year or more 4 2.9%
Location of diabetes provider
 On campus/near college 40 29.0%
 At home/near parents 82 59.4%
 Other 16 11.6%
Satisfaction with diabetes provider
 Mean 7.92
 Standard Deviation 2.10
Number of HCT milestones achieved
 0 9 6.5%
 1 25 18.1%
 2 31 22.5%
 3 47 34.1%
 4 26 18.8%
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*

Categories are not mutually exclusive

Participants were on average 20.5 ± 1.5 years of age. The participants were mostly female (80.4%), white non-Hispanic (82.6%), and in their junior year of college or above (55.8%). In this sample, 68.8% had a parent with a bachelor’s degree or higher, and 87.0% were covered on a parent’s health insurance plan.

Characteristics of the diabetes care team (Table 1)

The majority of participants (61.6%) listed an adult endocrinologist as a main diabetes care provider, while more than one-third (37.7%) listed a pediatric endocrinologist. The remainder endorsed a general adult practitioner (10.1%), general pediatrician (5.8%), or another provider (1.4%). Of note, participants could select more than one provider, so these categories are not mutually exclusive. Over half of participants (59.4%) saw their provider at home or near their parents, while 29% saw their provider on campus or near their college. The remainder listed a separate location, with responses ranging from a location between school and home, to the closest larger city, to a children’s hospital out of town. Most (92.0%) had contact with their provider in the past six months. Participants overall expressed satisfaction (mean score of 7.92 ± 2.10 on a 10-point Likert scale) with their main diabetes care provider.

Healthcare transition milestones (Table 2)

Table 2:

Transfer & HCT Milestones

Total Age Female Hispanic/non-white Parent < BA/BS Other insurance Provider Composite
N % Mean SD p-val N % p-val N % p-val N % p-val N % p-val Mean SD p-val
Total 138 20.49 1.53 111 80.4% 24 17.4% 43 31.2% 18 13.0% 0.00 1.00
Main diabetes care provider(s) *
 Pediatric endocrinologist 52 37.7% 19.71 1.21 <.01 39 35.1% 0.21 7 29.2% 0.34 14 32.6% 0.40 5 27.8% 0.35
 Adult endocrinologist 85 61.6% 20.93 1.49 <.01 71 64.0% 0.25 14 58.3% 0.72 31 72.1% 0.09 12 66.7% 0.64
 General pediatrician/NP 8 5.8% 20.25 0.71 0.59 5 4.5% 0.19 0 0.0% 0.18 3 7.0% 0.69 2 11.1% 0.30
 Adult physician/NP 14 10.1% 20.71 1.38 0.39 11 9.9% 0.85 2 8.3% 0.75 3 7.0% 0.41 4 22.2% 0.07
 Other 2 1.4% 21.00 2.83 0.76 2 1.8% 0.48 1 4.2% 0.22 0 0.0% 0.34 2 11.1% <.01
Location of diabetes provider 0.30 0.75 0.45 0.84 0.26
 On campus/near college 40 29.0% 20.75 1.50 32 28.8% 8 33.3% 12 27.9% 8 44.4%
 At home/near parents 82 59.4% 20.40 1.53 65 58.6% 15 62.5% 25 58.1% 9 50.0%
 Other 16 11.6% 20.31 1.62 14 12.6% 1 4.2% 6 14.0% 1 5.6%
Discussion about changing healthcare needs 0.78 0.41 0.93 0.80 0.55 0.03
 Yes 91 65.9% 20.56 1.59 75 67.6% 16 66.7% 29 67.4% 13 72.2% −0.13 0.99
 No 47 34.1% 20.36 1.41 36 32.4% 8 33.3% 14 32.6% 5 27.8% 0.25 0.98
Plan for changing healthcare needs | Had a discussion 0.59 0.62 0.25 0.88 0.73 0.38
 Yes 46 50.5% 20.67 1.61 37 49.3% 6 37.5% 15 51.7% 6 46.2% −0.05 0.92
 No 45 49.5% 20.44 1.59 38 50.7% 10 62.5% 14 48.3% 7 53.8% −0.20 1.06
Perceived helpfulness of discussion | No discussion 0.27 0.16 0.16 0.22 <.01 0.93
 Very helpful 16 34.0% 20.06 1.18 12 33.3% 5 62.5% 7 50.0% 1 20.0% 0.30 1.02
 Somewhat helpful 28 59.6% 20.61 1.50 23 63.9% 3 37.5% 7 50.0% 2 40.0% 0.21 0.98
 Not helpful 3 6.4% 19.67 1.53 1 2.8% 0 0.0% 0 0.0% 2 40.0% 0.33 1.06
Discussion about managing T1D in college 0.96 0.49 0.04 0.79 0.35 0.07
 Yes 111 80.4% 20.52 1.51 88 79.3% 23 95.8% 34 79.1% 13 72.2% −0.07 1.00
 No 27 19.6% 20.37 1.62 23 20.7% 1 4.2% 9 20.9% 5 27.8% 0.30 0.97
Plan for managing T1D in college | Had a discussion 0.33 0.11 0.11 0.08 0.17 0.63
 Yes 78 70.3% 20.41 1.45 65 73.9% 13 56.5% 20 58.8% 7 53.8% −0.09 1.04
 No 33 29.7% 20.79 1.65 23 26.1% 10 43.5% 14 41.2% 6 46.2% −0.03 0.90
Perceived helpfulness of discussion | No discussion 0.37 0.21 0.47 0.52 0.34 0.21
 Very helpful 11 40.7% 20.82 1.60 10 43.5% 0 0.0% 5 55.6% 1 20.0% 0.52 0.73
 Somewhat helpful 11 40.7% 19.91 1.45 10 43.5% 1 100.0% 3 33.3% 2 40.0% 0.36 1.23
 Not helpful 5 18.5% 20.40 2.07 3 13.0% 0 0.0% 1 11.1% 2 40.0% −0.33 0.66
Discussion about transitioning to an adult physician 0.31 <.01 0.49 0.21 0.17 0.68
 Yes 89 64.5% 20.58 1.50 78 70.3% 14 58.3% 31 72.1% 9 50.0% 0.01 0.97
 No 49 35.5% 20.33 1.59 33 29.7% 10 41.7% 12 27.9% 9 50.0% −0.03 1.06
Help with finding an adult physician | Had a discussion 0.51 0.15 0.61 0.07 0.04 0.96
 Yes 65 73.0% 20.66 1.41 55 70.5% 11 78.6% 19 61.3% 4 44.4% 0.02 0.92
 No 24 27.0% 20.38 1.74 23 29.5% 3 21.4% 12 38.7% 5 55.6% −0.01 1.12
Perceived helpfulness of discussion | No discussion 0.03 0.14 0.25 0.48 0.61 <.01
 Very helpful 21 42.9% 19.67 1.15 13 39.4% 5 50.0% 6 50.0% 3 33.3% −0.73 1.01
 Somewhat helpful 13 26.5% 20.92 1.80 7 21.2% 4 40.0% 4 33.3% 2 22.2% 0.39 0.81
 Not helpful 15 30.6% 20.73 1.67 13 39.4% 1 10.0% 2 16.7% 4 44.4% 0.59 0.71
Discussion about obtaining health insurance 0.09 0.65 0.95 0.62 <.01 0.37
 Yes 41 29.7% 20.95 1.91 32 28.8% 7 29.2% 14 32.6% 11 61.1% 0.14 0.89
 No 97 70.3% 20.30 1.30 79 71.2% 17 70.8% 29 67.4% 7 38.9% −0.06 1.04
Helpfulness of discussion | Had a discussion 0.59 0.27 0.44 0.03 0.17 0.58
 Very helpful 18 43.9% 20.67 2.20 12 37.5% 3 42.9% 10 71.4% 7 63.6% 0.07 0.85
 Somewhat helpful 21 51.2% 21.24 1.73 18 56.3% 3 42.9% 4 28.6% 3 27.3% 0.13 0.94
 Not helpful 2 4.9% 20.50 0.71 2 6.3% 1 14.3% 0 0.0% 1 9.1% 0.79 0.97
Perceived helpfulness of discussion | No discussion 0.16 0.04 0.15 0.35 <.01 0.76
 Very helpful 65 67.0% 20.45 1.28 56 70.9% 8 47.1% 17 58.6% 3 42.9% −0.02 1.03
 Somewhat helpful 24 24.7% 19.83 1.34 19 24.1% 7 41.2% 10 34.5% 1 14.3% −0.21 1.15
 Not helpful 8 8.2% 20.50 1.20 4 5.1% 2 11.8% 2 6.9% 3 42.9% 0.07 0.84
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*

Categories are not mutually exclusive

Differences emerged with regard to main diabetes care provider according to several sociodemographic variables. Older participants were more likely to list an adult endocrinologist than their counterparts (p<0.01). Likewise, younger participants were more likely to list a pediatric endocrinologist (p<0.01). Those who did not have a parent with a bachelor’s degree or higher (vs. those who did) were marginally more likely to list an adult endocrinologist (72.1% vs. 56.8%, p=0.09), and those not covered on a parent’s insurance plan (vs. those who were) were marginally more likely to list a general adult physician or nurse practitioner (22.2% vs. 8.3%, p=0.07).

Nearly 20% of participants completed all four milestones, while approximately one quarter (24.6%) completed zero or one. Regarding specific milestones, nearly two-thirds (65.9%) had a discussion with providers about how their healthcare needs might change during the transition to adulthood, half (50.5%) of whom developed a plan with their providers to address these changing needs. Participants who received care from adult providers (signified by higher provider composite scores) were less likely to have discussed their changing healthcare needs than their counterparts. Of all those who did not have an initial discussion, 93.6% stated that they would have found such a discussion to be somewhat/very helpful.

More than four-fifths (80.4%) of participants had spoken with healthcare providers about how to manage their diabetes while at college, of whom 70.3% had developed a plan with their providers for managing their diabetes at college. Hispanic/non-white participants were significantly more likely to have discussed managing their diabetes at college than their white non-Hispanic counterparts (95.8% vs. 77.2%, p=0.03). Those who had a parent with a bachelor’s degree or higher (vs. those who did not) were marginally more likely to have developed a plan to manage their T1D at college (75.3% vs. 58.8%, p=0.08). Of those who did not have a discussion about managing T1D in college, 81.4% answered that such a discussion would have been somewhat/very helpful.

Nearly two-thirds (64.5%) reported having a discussion with their pediatric providers about eventually seeing providers who treat adults, of whom 73.0% had received help from their pediatric provider with finding adult practitioners. Females were significantly more likely than males to have discussed seeing adult providers (70.3% vs. 40.7%, p<0.01), and participants who were not covered on a parent’s insurance plan (vs. those who were) were significantly less likely to have received help with finding adult providers (44.4% vs. 79.3%, p=0.04). The majority (69.4%) who did not discuss transitioning to adult providers stated that they would have found this discussion to be somewhat/very helpful.

Finally, while most participants achieved the above HCT milestones, only 29.7% reported discussing how to obtain or keep health insurance coverage as they reached adulthood. Older participants were marginally more likely (p=0.09) and those not covered on a parent’s insurance plan were significantly more likely (61.1% vs. 25.0%, p<0.01) to report having such a discussion. Those who did have this conversation overwhelmingly found it to be somewhat/very helpful (95.1%), while the majority of those who did not (91.7%) stated that they would have found it somewhat/very helpful.

Regression analysis (Table 3)

Table 3:

Regression Models for Healthcare Transition Outcomes

Unadjusted Models Adjusted Models
OR 95% CI P-value OR 95% CI p-value
Transfer (Provider Composite) Beta Beta
 Age 0.22 0.12 0.32 <.01 0.22 0.12 0.32 <.01
 Female vs. Male 0.22 −0.19 0.64 0.29 0.26 −0.14 0.67 0.20
 Non white or Hispanic vs. white non-Hispanic 0.08 −0.35 0.52 0.71 0.19 −0.23 0.62 0.37
 Parent with no bachelor’s degree vs. with bachelor’s degree 0.16 −0.20 0.52 0.38 0.07 −0.27 0.41 0.69
 Not on parent’s insurance plan vs. on parent’s insurance 0.31 −0.18 0.81 0.21 0.36 −0.11 0.83 0.13
Discussion about changing healthcare needs (Yes vs. No)
 Age 1.09 0.86 1.38 0.47 1.23 0.94 1.62 0.13
 Female vs. Male 1.43 0.60 3.40 0.42 1.83 0.71 4.74 0.21
 Non white or Hispanic vs. white non-Hispanic 1.04 0.41 2.64 0.93 1.26 0.46 3.43 0.66
 Parent with no bachelor’s degree vs. with bachelor’s degree 1.10 0.51 2.37 0.80 1.11 0.49 2.49 0.81
 Not on parent’s insurance plan vs. on parent’s insurance 1.40 0.47 4.20 0.55 1.90 0.59 6.17 0.28
 Composite for exclusively seeing adult providers 0.68 0.47 0.98 0.04 0.58 0.39 0.87 0.01
Plan for changing healthcare needs (Yes vs. No) | Any discussion
 Age 1.10 0.84 1.43 0.49 1.05 0.79 1.41 0.74
 Female vs. Male 0.76 0.26 2.25 0.62 0.61 0.19 1.99 0.41
 Non white or Hispanic vs. white non-Hispanic 0.53 0.17 1.59 0.25 0.47 0.15 1.49 0.20
 Parent with no bachelor’s degree vs. with bachelor’s degree 1.07 0.44 2.59 0.88 1.10 0.43 2.83 0.84
 Not on parent’s insurance plan vs. on parent’s insurance 0.82 0.25 2.64 0.73 0.69 0.19 2.47 0.56
 Composite for exclusively seeing adult providers 1.16 0.77 1.77 0.48 1.17 0.73 1.89 0.52
Greater perceived helpfulness of discussion | No discussion
 Age 0.87 0.58 1.32 0.52 0.92 0.56 1.51 0.74
 Female vs. Male 1.38 0.35 5.46 0.64 2.32 0.42 12.90 0.34
 Non white or Hispanic vs. white non-Hispanic 4.42 0.91 21.58 0.07 9.32 1.12 77.81 0.04
 Parent with no bachelor’s degree vs. with bachelor’s degree 2.96 0.83 10.57 0.10 2.34 0.57 9.54 0.24
 Not on parent’s insurance plan vs. on parent’s insurance 0.10 0.01 0.93 0.04 0.07 0.01 0.64 0.02
 Composite for exclusively seeing adult providers 1.06 0.59 1.91 0.86 1.08 0.56 2.11 0.82
Discussion about managing T1D in college
 Age 1.07 0.81 1.41 0.64 1.25 0.90 1.74 0.18
 Female vs. Male 0.67 0.21 2.12 0.49 0.81 0.23 2.80 0.74
 Non white or Hispanic vs. white non-Hispanic 6.80 0.88 52.74 0.07 8.71 1.06 71.40 0.04
 Parent with no bachelor’s degree vs. with bachelor’s degree 0.88 0.36 2.16 0.79 0.83 0.32 2.16 0.70
 Not on parent’s insurance plan vs. on parent’s insurance 0.58 0.19 1.81 0.35 0.55 0.16 1.93 0.35
 Composite for exclusively seeing adult providers 0.68 0.44 1.06 0.09 0.61 0.38 0.99 0.05
Plan for managing T1D in college (Yes vs. No) | Any discussion
 Age 0.85 0.65 1.11 0.23 0.81 0.60 1.10 0.18
 Female vs. Male 2.17 0.84 5.63 0.11 1.72 0.60 4.92 0.31
 Non white or Hispanic vs. white non-Hispanic 0.46 0.18 1.19 0.11 0.54 0.19 1.52 0.24
 Parent with no bachelor’s degree vs. with bachelor’s degree 0.47 0.20 1.10 0.08 0.64 0.25 1.62 0.34
 Not on parent’s insurance plan vs. on parent’s insurance 0.44 0.14 1.44 0.18 0.65 0.18 2.38 0.51
 Composite for exclusively seeing adult providers 0.94 0.63 1.42 0.78 1.10 0.69 1.77 0.69
Greater perceived helpfulness of discussion | No discussion
 Age 1.24 0.79 1.94 0.36 1.10 0.65 1.84 0.73
 Female vs. Male 4.46 0.56 35.23 0.16 4.14 0.43 39.63 0.22
 Non white or Hispanic vs. white non-Hispanic 0.56 0.01 22.75 0.76 0.39 0.01 26.20 0.66
 Parent with no bachelor’s degree vs. with bachelor’s degree 2.45 0.52 11.61 0.26 1.99 0.33 11.97 0.45
 Not on parent’s insurance plan vs. on parent’s insurance 0.26 0.04 1.72 0.16 0.31 0.04 2.35 0.26
 Composite for exclusively seeing adult providers 1.65 0.77 3.54 0.20 1.84 0.78 4.31 0.16
Discussion about transitioning to an adult physician
 Age 1.12 0.89 1.41 0.34 1.09 0.84 1.41 0.54
 Female vs. Male 3.44 1.44 8.20 <.01 3.46 1.37 8.75 <.01
 Non white or Hispanic vs. white non-Hispanic 0.73 0.30 1.79 0.49 0.91 0.34 2.46 0.85
 Parent with no bachelor’s degree vs. with bachelor’s degree 1.65 0.75 3.61 0.21 2.11 0.89 4.99 0.09
 Not on parent’s insurance plan vs. on parent’s insurance 0.50 0.18 1.36 0.17 0.56 0.19 1.66 0.29
 Composite for exclusively seeing adult providers 1.04 0.73 1.48 0.82 0.96 0.65 1.42 0.84
Help with finding an adult provider (Yes vs. No) | Any discussion
 Age 1.14 0.83 1.57 0.42 1.06 0.73 1.54 0.76
 Female vs. Male 0.24 0.03 1.98 0.18 0.18 0.02 1.68 0.13
 Non white or Hispanic vs. white non-Hispanic 1.43 0.36 5.63 0.61 1.53 0.35 6.73 0.57
 Parent with no bachelor’s degree vs. with bachelor’s degree 0.41 0.16 1.08 0.07 0.40 0.14 1.12 0.08
 Not on parent’s insurance plan vs. on parent’s insurance 0.25 0.06 1.02 0.05 0.29 0.06 1.32 0.11
 Composite for exclusively seeing adult providers 1.04 0.64 1.68 0.88 1.08 0.60 1.95 0.79
Greater perceived helpfulness of discussion | No discussion
 Age 0.69 0.48 1.00 0.05 0.71 0.45 1.12 0.14
 Female vs. Male 0.47 0.15 1.46 0.19 0.40 0.09 1.78 0.23
 Non white or Hispanic vs. white non-Hispanic 1.98 0.52 7.50 0.32 2.78 0.44 17.68 0.28
 Parent with no bachelor’s degree vs. with bachelor’s degree 1.78 0.52 6.11 0.36 6.79 1.14 40.59 0.04
 Not on parent’s insurance plan vs. on parent’s insurance 0.53 0.14 2.05 0.36 0.33 0.05 2.07 0.24
 Composite for exclusively seeing adult providers 0.30 0.16 0.56 <.01 0.25 0.12 0.51 <.01
Discussion about obtaining health insurance
 Age 1.33 1.04 1.70 0.03 1.38 1.04 1.81 0.02
 Female vs. Male 0.81 0.33 1.99 0.65 0.98 0.35 2.75 0.97
 Non white or Hispanic vs. white non-Hispanic 0.97 0.37 2.55 0.95 0.89 0.30 2.65 0.84
 Parent with no bachelor’s degree vs. with bachelor’s degree 1.22 0.56 2.65 0.62 0.94 0.40 2.23 0.90
 Not on parent’s insurance plan vs. on parent’s insurance 4.71 1.68 13.26 <.01 5.54 1.77 17.40 <.01
 Composite for exclusively seeing adult providers 1.22 0.84 1.76 0.30 0.98 0.64 1.50 0.93
Greater helpfulness of discussion | Any discussion
 Age 0.89 0.65 1.23 0.49 0.92 0.61 1.39 0.70
 Female vs. Male 0.29 0.06 1.37 0.12 0.25 0.04 1.54 0.13
 Non white or Hispanic vs. white non-Hispanic 0.73 0.15 3.64 0.70 0.27 0.04 2.13 0.21
 Parent with no bachelor’s degree vs. with bachelor’s degree 6.17 1.49 25.49 0.01 10.53 1.59 69.54 0.01
 Not on parent’s insurance plan vs. on parent’s insurance 2.52 0.62 10.24 0.20 0.49 0.07 3.37 0.47
 Composite for exclusively seeing adult providers 0.80 0.40 1.60 0.53 0.84 0.35 2.04 0.70
Greater perceived helpfulness of discussion | No discussion
 Age 1.25 0.90 1.73 0.19 1.15 0.80 1.66 0.44
 Female vs. Male 2.87 1.05 7.83 0.04 2.40 0.83 6.92 0.11
 Non white or Hispanic vs. white non-Hispanic 0.40 0.14 1.10 0.08 0.67 0.21 2.13 0.49
 Parent with no bachelor’s degree vs. with bachelor’s degree 0.65 0.27 1.58 0.34 0.59 0.23 1.52 0.27
 Not on parent’s insurance plan vs. on parent’s insurance 0.18 0.04 0.79 0.02 0.18 0.04 0.82 0.03
 Composite for exclusively seeing adult providers 1.08 0.72 1.62 0.70 1.02 0.66 1.59 0.93
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Notes:

Age and provider composite were modeled as continuous variables, while all other identifiers were modeled as categorical variables.

Adjusted models controlled for age, sex, race/ethnicity, parental education, insurance source, and provider composite.

Transfer (provider composite) was modeled with linear regression.

Discussion about changing healthcare needs, discussion about mangaging T1D in college, discussion about transitioning to an adult physician, and discussion about obtaining health insurance were modeled with logistic regression. Plan for changing healthcare needs, plan for managing T1D in college, and help with finding an adult provider were modeled with logistic regression as a subset consisting only of those participants who had a discussion about the respective milestones.

Greater helpfulness of discussion was modeled with ordinal logistic regression as a subset consisting only of those participants who had a discussion about the respective milestones.

Greater perceived helpfulness of discussion in all categories was modeled with ordinal logistic regression as a subset consisting only of those participants who had no discussion about the respective milestones.

After adjustment, only older age appeared to be significantly associated with higher provider composite scores (β: 0.22, 95% CI: 0.12–0.32); that is, for every one-year increase in age, the provider composite score (likelihood of exclusively seeing adult providers) increased by 0.22. Those receiving diabetes care from adult providers were less likely to have discussed their changing healthcare needs during the transition to adulthood (adjusted odds ratio, AOR: 0.58, 95% CI: 0.39–0.87). Among those who did not have this discussion, Hispanic/non-white participants reported a higher perceived need to have such a conversation compared to their white, non-Hispanic counterparts (AOR: 9.32, 95% CI: 1.12–77.81). Those not on their parent’s insurance endorsed a lower perceived need for such a conversation compared to those still covered by their parent’s insurance (AOR: 0.07, 95% CI: 0.01–0.64).

While participants who identified as non-white or Hispanic reflected an increased need for discussions about changing healthcare needs, participants in this demographic (vs. white non-Hispanic participants) were significantly more likely to have had a discussion with providers about managing diabetes in college (AOR: 8.71, 95% CI: 1.06–71.40). Those receiving care from adult providers were less likely to have had a discussion with their provider about managing T1D in college (AOR: 0.61, 95% CI: 0.38–0.99).

Female participants were more likely than males to have discussed transitioning to adult providers (AOR: 3.46, 95% CI: 1.37–8.75). While those whose parents did not have a bachelor’s degree were marginally more likely to have had such a discussion with their provider (AOR: 2.11, 95% CI: 0.89–4.99), they were marginally less likely to have received help with finding an adult provider given that they had a discussion (AOR: 0.40, 95% CI: 0.14–1.12) and significantly more likely to highly rate the perceived need for that conversation given that they did not have a discussion (AOR: 6.79, 95% CI: 1.14–40.59). Among participants who did not have a discussion about transitioning to adult-centered care, those who received care from adult providers rated the perceived helpfulness lower than their counterparts (AOR: 0.25, 95% CI: 0.12–0.51).

Finally, older participants (AOR: 1.38, 95% CI: 1.04–1.81) and those not on their parents’ insurance (AOR: 5.54, 95% CI: 1.77–17.40) were more likely to have had a discussion about obtaining health insurance than their respective counterparts. Among those who had a conversation about insurance, those whose parents did not have a bachelor’s degree more highly rated the helpfulness of such a conversation (AOR: 10.53, 95% CI: 1.59–69.54). Among those who did not have a conversation about insurance, those who did not have parental insurance rated the perceived helpfulness lower than their counterparts (AOR: 0.18, 95% CI: 0.04–0.82).

Discussion

This study demonstrates that while many college youth with T1D do achieve certain HCT milestones, there is room for improvement in several components of this multi-step process. Approximately two-thirds of participants reported having discussions with providers about their changing healthcare needs and about seeing adult practitioners. Even higher rates (over 80%) were noted with regard to discussing management of T1D in college. Less impressive was the rate of discussions surrounding health insurance, as fewer than one-third indicated having this conversation with providers. Interestingly, while this population endorsed higher rates of the first two milestones compared to a nationwide survey of all young adults, they endorsed lower rates of discussion about health insurance.23 This finding is concerning, for while many participants were covered on a parent’s insurance plan during study enrollment, this population is more likely to face challenges locating comprehensive and affordable insurance coverage on account of their higher baseline health needs, especially after age-related ineligibility of parental insurance benefits.

It is important to recognize that transition of care and transfer to adult providers are neither synonymous nor mutually exclusive, but rather interrelated; this study identified that receipt of care from adult providers may actually reduce the odds of having a discussion with providers about changing healthcare needs. Adult providers may be accustomed to more autonomous patients and therefore spend less time on preparation for adult healthcare or assume that it has been previously addressed—particularly for those attending college who may be presumed to have high degrees of self-efficacy. Additionally, adult providers may not have as much training in pediatric-onset conditions or adolescent development, or they may not have familiarity with the types of wraparound services that are often provided in pediatric health systems through Title V.14 Accordingly, those who remain under the care of a pediatric provider for longer may have greater opportunities to achieve certain milestones and therein better prepare for their HCT. Nevertheless, it is still important for all providers to routinely discuss issues related to emerging adulthood such as sexual and reproductive health, mental health and substance use, and complications of chronic disease.

Importantly, there was a strong desire for conversations about transition-related topics: nearly all of those who did not have discussions about these issues stated that they would have found them somewhat or very helpful. Notably, while participants did frequently have discussions about HCT milestones, there were gaps in the development of plans on the part of their providers. Only half of those who discussed their changing healthcare needs had developed a plan with their provider to address these needs. Additionally, less than three-quarters of participants who had discussed managing T1D in college and transitioning to adult practitioners had received help from providers with these issues. While the receipt of education and support related to transition milestones is essential, improvement is needed with regard to the implementation of proactive and practical efforts to ensure their successful completion.

Unsurprisingly, this study demonstrated significant disparities in the completion of HCT milestones according to sociodemographic variables. As predicted, older age was positively associated with receiving care from adult providers and discussing health insurance coverage with providers. We initially hypothesized that those covered under a parent’s insurance plan would be more likely to achieve HCT milestones, yet we identified that these participants were less likely to have discussed the issue of health insurance with their providers, which may suggest a relative dependency or lack of autonomy in this particular domain. Additional sociodemographic variables that were not posited in the initial hypothesis unexpectedly emerged as predictors of certain HCT outcomes: female sex, level of parental education, and identification as Hispanic or non-white. Female sex and higher levels of parental education have been positively associated with some aspects of transition readiness in those with and without chronic medical conditions.21,29–30 However, our study sample may not be representative of racial and ethnic minority experiences with HCT given the small number of minority youth included. In fact, those with racial/ethnic minority backgrounds tend to experience disproportionate challenges throughout the transition period.24 According to one survey of children with SCHN, Hispanic and non-Hispanic Black youth were significantly less likely to obtain transition counseling than their non-Hispanic white peers.31

To our knowledge, this is one of very few studies to analyze sociodemographic predictors of HCT milestones in AYA with T1D. One study, which evaluated sociodemographic factors associated with transfer to adult providers in AYA with T1D, found that older age and lower levels of parental education were associated with leaving pediatric care, whereas race/ethnicity and insurance status were not.13 Similar to our cohort, that sample was predominantly white non-Hispanic and had high levels of parental education; while coverage on a parental insurance plan was not documented, most participants were privately insured. Notably, the only transition outcome assessed in that study was transfer to adult providers. The fact that additional sociodemographic predictors of HCT outcomes were uncovered in our study—specifically, sex and insurance source—testifies to the importance of evaluating a broader range of outcomes, as provider transfer is only one aspect of the healthcare transition.

There are several limitations to this study. First, participants were predominantly female, white non-Hispanic, and socioeconomically advantaged: the majority were covered on a parent’s insurance plan and had parents who were highly educated. Furthermore, as participants were recruited via an internet-based strategy, those with greater access to web-based resources may have been disproportionately included. As such, this relatively homogenous sample is not representative of all college youth with T1D, and the results may not be generalizable. Moreover, the sample includes only college-attending youth rather than all AYA with T1D; therefore, these participants may have relatively high degrees of self-efficacy, as barriers to college entry for those with chronic conditions can be high.32 Additionally, the sample size of some of the most vulnerable minority groups was small; thus, the study may have been underpowered to detect differences in all subgroups, and some reported estimates may be imprecise, as evidenced by their wider confidence intervals. However, even with this limited sample, key findings suggest concerning disparities in transition-related outcomes and may still be relevant for other transition-aged youth without T1D. Regardless of population, the transition process should be one that is deliberate, comprehensive, action-oriented, and inclusive, and it should be undertaken by generalists, specialists, pediatricians, and adult clinicians alike. Such efforts should include specific targeting of patient subgroups who may be at increased risk of lapses in transition milestones, explicit delineation of plans to address all components of the transition process, and improved focus on obtaining health insurance coverage during adulthood.

Further limitations include that HCT outcomes were self-reported and not verified by other means. Additionally, brief questions addressing HCT milestones were drawn from another survey,28 and certain questions, such as those inquiring about a discussion of “changing healthcare needs,” are relatively non-specific. A more detailed and explicit validated scale assessing transition readiness was not used, although such tools have previously been developed.33–36 These scales, however, may be more relevant for younger adolescents and may not demonstrate significant variability in this college-aged population. Thus, future studies should address these limitations by evaluating HCT milestones in more diverse and less advantaged populations and expanding the scope of HCT outcomes assessed, including with the use of previously validated tools.

In spite of these limitations, this study has several strengths including the focus on a population that can be challenging to identify and recruit, the assessment of a broad range of HCT milestones, and the examination of sociodemographic differences that can impact milestone achievement. Accordingly, it provides valuable information about HCT progress in college youth with T1D. Though this population endorsed high rates of achievement of individual HCT milestones, deficiencies were noted in their experiences of developing an HCT plan with their provider, receiving education to promote transition readiness, and transferring care to adult practitioners. Additionally, the issue of health insurance emerged as a particularly neglected topic of discussion that has important implications for this medically vulnerable population at risk of becoming uninsured.37,38 This study is one of the first to address sociodemographic predictors of HCT outcomes in this population and revealed that participants who were younger, male, and not covered on a parent’s insurance plan were more likely to experience deficiencies in transition care. It will be important for future studies to investigate sociodemographic differences in transition milestones among additional populations of college youth to determine if these findings are consistent across other patient subgroups undergoing transitions of care.

What’s New.

College youth with T1D experience lapses in milestones related to the transition from pediatric to adult-centered healthcare. This study identifies areas of greatest need in transition preparation as well as sociodemographic disparities in healthcare transition outcomes in this population.

Acknowledgments:

All named authors have seen the final draft of the manuscript, approve of its submission, and are willing to take responsibility for its entirety. The authors would like to thank Kara Magane, MS and Eliza Nelson, MS for their assistance with data collection. Funding support was provided by the Boston Children’s Hospital Awards Committee Pilot Research Project Funding (FP01017994), the UCLA Children’s Discovery and Innovation Institute (CDI) Research Recognition Award, and a career development award from the National Institutes of Health (NIH/NIDDK K01DK116932; PI: Wisk). The authors have listed everyone who contributed significantly to the work. The funding sources had no involvement in the study design; the collection, analysis and interpretation of data; the writing of the report; or the decision to submit the article for publication.

Footnotes

Conflicts of Interest: The authors have no potential, perceived, or real conflicts of interest to declare.

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