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. Author manuscript; available in PMC: 2016 Sep 1.
Published in final edited form as: J Pediatr Nurs. 2015 Jul 9;30(5):e47–e62. doi: 10.1016/j.pedn.2015.05.019

A Systematic Review of Transitional Care for Emerging Adults with Diabetes

Mary K Findley a, EunSeok Cha b, Eugene Wong c, Melissa Spezia Faulkner d
PMCID: PMC4567467  NIHMSID: NIHMS705058  PMID: 26164412

Introduction

Emerging adulthood is a newly recognized developmental period of life from the late teens through the twenties (Arnett, 2000; Garvey et al., 2014; Ritholz et al., 2014). During this period, emerging adults explore their identity and experience many new transitions, demands, expectations, and roles as they develop from dependent adolescents to independent young adults (Arnett, 2000). For emerging adults with chronic health care conditions, one transition that must be considered is the move from parent-directed pediatric to self-managed adult healthcare. This transition addresses the medical, psychosocial, educational, and vocational needs of the emerging adult with a lifelong chronic condition (Blum et al., 1993).

In adolescent diabetes care, transitional care from pediatric to adult health services is a high priority. Diabetes is a complex, chronic disease that is increasing in prevalence worldwide (Patterson et al., 2012; Vehik & Dabelea, 2011). In children and adolescents in the United States between 2001 and 2009, the prevalence of type 1 diabetes increased by 21%, affecting males and females, most racial/ethnic, and age groups (Hamman et al., 2014). The incidence rate of type 1 diabetes is rising across Europe by an average of approximately 3-4% per year (Patterson, et al., 2012). In Europe, new cases of type 1 diabetes for youth under 5 are predicted to double by 2020, and the prevalence of type 1 diabetes in youth under 15 is predicted to rise 70% by 2020 (Patterson, Dahlquist, Gyurus, Green, & Soltesz, 2009). As the prevalence of type 1 diabetes in youth increases worldwide, transition from pediatric to adult healthcare services and learning to live with a lifelong chronic condition will become a global concern.

Type 1 diabetes leads to absolute insulin deficiency due to beta cell destruction (American Diabetes Association, 2015); whereas, type 2 diabetes is due to a progressive insulin secretory defect and insulin resistance, often characterized by excessive weight gain (Cali & Caprio, 2008). Concomitant with the rise in pediatric obesity is an increased risk for the future development of type 2 diabetes and prediabetes (Reinehr et al., 2009). Prediabetes consists of impaired fasting glucose 100 to 125 mg/dL (5.6 to 6.9 mmol/L), impaired glucose tolerance to a 2-hour oral glucose tolerance test (OGTT) of 140 to 199 mg/dL (7.8 to 11.0 mmol/L), or A1C 5.7-6.4% (American Diabetes Association, 2015). In the United States National Health and Nutrition Examination Survey (NHANES) of participants aged 12 to 19 years from 1999 to 2008, the prevalence of prediabetes/diabetes increased from 9% to 23% (May, Kuklina, & Yoon, 2012). Between 2001 and 2009 the prevalence for type 2 diabetes increased by 30.5%, in both sexes for ages 10 years and up, and among Hispanic and non-Hispanic white, and African American youth (Hamman, et al., 2014). In light of these increases, there is an urgent need not only to identify youth at risk for prediabetes and type 2 diabetes, but to also ensure appropriate transitional care and ongoing screening into emerging adulthood.

Not only are the rates of prediabetes and diabetes among adolescents increasing and placing a greater demand on health systems for transitional care, emerging adults are also at increased risk for declining health status during this time in transition of health care. At the beginning of emerging adulthood, which coincides with the transition from pediatric to adult care, glycemic control in those with diabetes is known to decrease significantly (Bryden et al., 2001; Insabella, Grey, Knafl, & Tamborlane, 2007). Optimal glycemic control during this time of life reduces the likelihood of serious long-term health complications later in life. Specifically, tight glycemic control during adolescence and emerging adulthood decreases both microvascular and neurological diabetes complications (Blonde, 2012; Silverstein et al., 2005). Seamless transitional care is needed in order to optimize glycemic control for emerging adults and to reduce future complications.

In 2001, the Institute of Medicine's landmark publication, Crossing the Quality Chasm: A New Health System of the 21st Century, provided evidence that the U.S. health care delivery system too often fails to deliver high quality care. Given the expected onslaught of emerging adults with or at risk for developing diabetes and ongoing challenges to address existing gaps in care delivery, a growing abyss may ensue. More young adults may experience suboptimal health care utilization, poor glycemic control, acute exacerbations, and chronic complications, some of which may go undetected (Peters & Laffel, 2011) .

There are ongoing efforts to promote the value of seamless, coordinated, and developmentally appropriate care by leading United States organizations, such as the U.S. Department of Health and Human Service's Maternal and Child Health Bureau (2008), the American Academy of Pediatrics (Cooley & Sagerman, 2011), and the American Diabetes Association (Peters & Laffel, 2011). However, there is currently no consensus model of transitional care for adolescents and emerging adults with diabetes in the United States. Other countries have also addressed transitional care for adolescents with diabetes; however, the majority of evidence worldwide remains at the level of expert agreement or clinical experience rather than being based upon well-conducted randomized controlled trials or meta-analyses with quality ratings (Peters & Laffel, 2011).

Recent publications address the importance of transitional care for youth with type 1 diabetes and propose frameworks for establishing comprehensive models of care (Hanna, 2012; Van Walleghem, MacDonald, & Dean, 2012). Recent systematic reviews have focused on identifying the level of evidence and describing the evidence on diabetes transitional care (Hanna & Woodward, 2013), examining the impact of transitional care on health outcomes and health behaviors in those with type 1 diabetes (Sheehan, While, & Coyne, 2015), and investigating the experiences of diabetes transitional care from the perspective of the patient, parent, and provider (Sheehan, et al., 2015). However, these reviews excluded adolescents and emerging adults with type 2 diabetes or prediabetes whose numbers have drastically increased (Dabelea et al., 2014). The health risks associated with the emerging adult period for those with diabetes, in addition to the increase in older adolescents diagnosed with diabetes and prediabetes, indicate an urgent need for innovative and successful care models for transitional care and beyond. (Winocour, 2014) Therefore, the purpose of this systematic review was to examine the level of evidence from primary research for the process and outcomes of transitional care programs for adolescents and emerging adults with either type 1 diabetes, type 2 diabetes, or prediabetes. Our original PICO (patient, intervention, comparison, outcome) question was: What are the major components of transitional care programs (interventions) and health outcomes compared to usual care for adolescents or emerging adults with type 1 or type 2 diabetes or prediabetes? We also explored studies that reported perceptions of patients, providers, and parents regarding current and proposed transitional care programs. Our intent was to provide a synthesis of the best evidence to inform clinicians, researchers and policy makers of key components of a model of high quality transitional care for emerging adults with diabetes or prediabetes.

Methods

Design

A systemic review was conducted primarily following the Joanna Briggs Institute (JBI) guidelines (Aromataris & Pearson, 2014) and the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) statement (Liberati et al., 2009; Moher, Liberati, Tetzlaff, & Altman, 2009). The PRISMA statement provides a 27-item checklist and a four phase flow diagram that include items deemed essential for transparent reporting in systematic reviews. PRISMA helps to ensure transparent and complete reporting so that the benefits and harms of an intervention study may be assessed (Liberati, et al., 2009; Moher, et al., 2009).

Search Criteria

The inclusion criteria for target studies were: a) data-based investigations that addressed health care transition for emerging adults with diabetes or prediabetes; b) focused on adolescents aged 14-18 years and/or emerging adults aged 19-29; c) qualitative or quantitative; and d) conducted in the United States or internationally. Exclusion criteria were: a) non-research articles; b) literature review papers; c) theoretical, expert opinion, or editorial articles that did not report empirical findings; d) not a full text article; e) studies not solely focused on health care transition; and f) studies solely focused on chronic conditions other than diabetes or prediabetes. The electronic databases PubMed, Cumulative Index in Nursing and Allied Health Literature (CINAHL), Ovid/MEDLINE, Scopus, Web of Science, and Embase were used for the search. Articles were retrieved from the last 10 years (2004-2014) because this is the time frame when the need to address transitional care began to appear in the literature. Combinations of search terminologies related to health care transition (continuity of care, transitional care, or transition), diabetes (type 1 diabetes, type 2 diabetes, prediabetes, or maturity onset diabetes of the young (MODY), and emerging adults (young adults, young adult men, young adult women, adolescents, late adolescents, college students, high school students, youths, or pediatrics). The search was limited to publications written in English.

Search Outcome

In September, 2014, eligible articles were retrieved independently by two trained graduate student researchers under the supervision of two PhD prepared nurse researchers with the support of a librarian. The initial literature search identified 772 articles across the six databases (Figure 1). Excluding duplicates, 634 articles remained after being evaluated for pre-established inclusion and exclusion criteria. Matched pairs of researchers reviewed the titles of the 634 articles and excluded 444 based upon topics of healthcare that were not related to transitional care or that focused on chronic conditions other than diabetes. An abstract review of 190 articles was then performed by the matched pairs. A total of 122 articles were excluded by review of abstracts; most studies were excluded because they were not designed primarily to explore the diabetes care transition for emerging adults. A full-text review of 68 articles was completed by the matched pairs. Thirty-seven additional articles were excluded in this phase. Reasons for exclusion are noted in Figure 1. The remaining 31 articles were used for the synthesis of the information in this review. Included in this final set of articles were three studies, each of which had separate findings reported in two different articles that used the same data set or a secondary data set (Garvey, et al., 2014; Ritholz, et al., 2014), (Dovey-Pearce, Doherty, & May, 2007; Dovey-Pearce, Hurrell, May, Walker, & Doherty, 2005), and (Allen, Channon, Lowes, Atwell, & Lane, 2011; Allen et al., 2012). Although type 1 diabetes, type 2 diabetes, and prediabetes were all included in the search criteria, the 31 articles remaining for synthesis of the information in this review all focused on individuals with type 1 diabetes. This search process illuminated the absence of research on the transitional needs of individuals with type 2 diabetes and prediabetes and demonstrated the major gap in knowledge in how to best provide transitional care for these individuals.

Figure 1. Search Strategies and Review Process.

Figure 1

The literature search identified 772 articles across the six databases. Duplicates were removed, and articles with titles or abstracts that did not fit within with the inclusion and exclusion criteria were also removed, leaving a total of 68 full text articles for review. Thirty-seven additional articles were excluded during this full text review for the reasons listed in the exclusions box above. The remaining 31 articles were used for synthesis of the information in this review.

Quality Assessment and Grading of Evidence

Once the final set of 31 articles was determined, the quality of each individual article was assessed using three modified scales of assessment criteria based on the JBI (Aromataris & Pearson, 2014; The Joanna Briggs Institute, 2014). The three scales used criteria deemed essential for evaluating either: 1) cross-sectional, 2) intervention and group comparison studies, or 3) qualitative studies (Table 1). The checklists are designed to assess many aspects of a study's quality, including its design, its methods and analysis, and its clinical relevance (Aromataris & Pearson, 2014; The Joanna Briggs Institute, 2014). Assessment included analysis of the aims, methods, results, and conclusions of each research article. Quality assessment was evaluated for inter-rater reliability by matched pairs of researchers using a ten-point system for each scale, with possible total scores ranging from 1 (lowest) to 10 (highest) rating. The score was then used in evaluating the level of evidence for each article.

Table 1.

Quality Assessmenta

Cross-Sectional Study Intervention or Group Comparison Study Qualitative Study
Did the study address a clearly focused issue? Is the assignment to treatment groups truly random? Is there congruity between the stated philosophical perspective and the research methodology?
Did the study clearly address the aims? Are participants blind to treatment allocation? Is there congruity between the research methodology and the research questions or objectives?
Did the authors use an appropriate method to answer their question? Is allocation to treatment groups concealed from the allocator? Is there congruity between the research methodology and the methods used to collect data?
Were subjects recruited in an acceptable way? Are the outcomes of people who withdrew described and included in the analysis? Is there congruity between the research methodology and the representation and analysis of data?
Were the measures accurately measured to reduce bias? Are those assessing the outcomes blind to the treatment allocation? Is there congruity between the research methodology and the interpretation of results?
Were the data collected in a way that addressed the research issue? Are the control and treatment groups comparable at entry? Is there a declaration of the researcher's cultural or theoretical orientation?
Did the study have enough participants to minimize the play of chance? Are groups treated identically other than for the named interventions? Is the influence of the researcher on the research, and vice versa addressed?
Was the data analysis sufficiently rigorous? Are outcomes measured in the same way for all groups? Is there representation of participants and their voices?
Is there a clear statement of findings? Are outcomes measured in a reliable way? Is there ethical approval by an appropriate body?
Can the results be applied to the local population? Is appropriate statistical analysis used? Is there a relationship between the conclusions of the study and the analysis or interpretation of the data?
a

Adapted from JBI (Aromataris & Pearson, 2014)

The American Diabetes Association (ADA) evidence grading system of levels A, B, C and E was applied to each article (American Diabetes Association, 2014). Level A indicated clear evidence from a well-conducted generalizable RCT that was adequately powered. Level B indicated supportive evidence from a well-conducted cohort study or case-control study. Level C indicated supportive evidence from poorly controlled or uncontrolled studies, RCT's with one or more major or three or more minor methodological flaws, observational studies with a high potential for bias, case studies or case reports, or conflicting evidence with the weight of the evidence supporting the recommendation. Level E indicated expert consensus or clinical experience.

Results

This systematic review resulted in articles reporting both quantitative studies (18 articles) and qualitative studies (13 articles). The majority of quantitative studies were conducted in North America (United States = 8; Canada =3; Australia = 2; Germany =2; Italy =2; Poland =1), and the majority of qualitative studies were conducted in Europe (United Kingdom = 8, Netherlands =1; Ireland =1; Sweden =1; United Sates = 2) . Only one randomized clinical trial assessing a transitional care intervention met the criteria for evaluation in this review (Huang et al., 2014). Quality scores using the scales adapted from the JBI (Table 1) ranged from 4 to 10, on a scale of 1 (lowest) to 10 (highest). The mean quality score was 8.5 with a standard deviation of 1.7. Level of evidence using ADA grading system ranged from A to C (A: n=1; B: n=6; C: n=24). The majority of studies have a level of evidence rated as C, indicating that the current evidence is primarily of a descriptive and observational nature. The quality score, level of evidence, and summary information for all articles are presented in Table 2.

Table 2.

Study Description and Characteristics

# Author/Year Location of Study Study Design and Methods Purpose/Aims Sample (size, description) Quality Level of Evidence
1a Allen, Channon, Lowes, Atwell, & Lane, 2011 United
Kingdom
Qualitative; longitudinal
qualitative case studies, semi-
structured interviews;
recruited from 5 different
diabetes services throughout
the UK
To explore young adults’ and
caregivers’ experiences during
transition from child to adult
diabetes services
Adolescents ages 14-22 with
T1D (n=46), & mothers
(n=39).
10 C
2a Allen et al., 2012 England Mixed methods; semi-
structured interviews, selected
observation, case studies &
surveys; recruited from the
diabetes services in England
To identify the mechanisms of a
smooth transition to adult diabetes
care and the service components
through which these can be
achieved
Interviews of health care
professionals (n=38), young
adults (n=46), and caregivers
(n=39); surveys of young
adults (n=82).
10 C
3 Begley, 2013 Ireland Mixed-methods; surveys with
closed and open-ended
questions; surveys sent to all
known consultants, MDs,
CNS's, and APN's
To clarify how the transition from
childhood to adult healthcare is
managed in young people with
cystic fibrosis (CF) and T1D
Consultants, MDs, CNS's,
and APN's caring for teens
with CF and T1D; (n=71;
54% response rate)
8 C
4 Busse et al., 2007 Germany Quantitative; cross-sectional
structured survey administered
through phone interview;
Sample eligibility criteria: at
least 18 years of age, at least 6
months had elapsed after
transition and the patient had
no other chronic disorder apart
from diabetes
To determine the patients’
perception of transfer
arrangements and to analyze
health care use and metabolic
control
Cases identified through
diabetes registry of the Clinic
and Policlinic for Children
and Adolescents, University
of Leipzig, Germany; (n=101)
10 C
5 Cadario et al., 2009 Italy Quantitative; retrospective
cohort study; comparison
group of PDS patients
discharged with an
unstructured transfer;
exposure group discharged
with structured transition
To investigate the outcomes of a
structured transition program to
an unstructured one
Adolescents and young adults
(n=62) discharged from the
pediatric diabetes service
(PDS) to the adult pediatric
service (ADS)
9 C
6 de Beaufort, Jarosz-Chobot, Frank, de Bart, & Deja, 2010 International Quantitative; cross-sectional
questionnaire
To evaluate the practices of
diabetes health care providers
concerning the transition from
pediatric to adult diabetes care
Email with survey link sent to
all members of the
International Society for
Pediatric and Adolescent
Diabetes (n=92; 16%
response rate)
9 C
7b Dovey-Pearce, Doherty, & May, 2007 England Qualitative; thematic analysis
of audio recorded interviews;
recruited from young adults
served by specialist diabetes
services
To describe and understand the
influence of diabetes upon
psychosocial development and to
highlight the implications for
healthcare teams.
16-25 year olds with T1D
(n=19); 8 males; 11 females
10 C
8b Dovey-Pearce, Hurrell, May, Walker, & Doherty, 2005 England Qualitative; semi-structured
interviews and focus groups;
recruited from young adults
served by specialist diabetes
services
To understand the opinions of
young adults with diabetes who
were receiving secondary care
services about the provision of
diabetes services
16-25 year olds with T1D
(n=19); 8 males; 11 females
10 C
9c Garvey et al., 2014 United
States of
America
Qualitative; focus group
interviews; recruited from
emerging adults receiving
adult diabetes care at a single
center
To explore the experience of
transition from pediatric to adult
diabetes care reported by post-
transition emerging adults with
T1D
Young adults with T1D, 22-
30 years old, diagnosed with
diabetes at ≤18 years of age
(n=26)
8 C
10 Garvey et al., 2013 United
States of
America
Quantitative; cross-sectional
survey; recruited from
emerging adults with T1D
who had been previously
followed in the pediatric
diabetes clinic at Boston
Children's hospital
To describe the current status of
adult diabetes care in young
adults with T1D and examine
associations between health care
transition experiences and care
utilization
205 surveys sent to sample,
65 returned (32% response
rate)
9 C
11 Garvey et al., 2012 United
States of
America
Quantitative; cross-sectional
survey; recruited from
emerging adults with T1D
aged 22-30 years, under the
care of any adult diabetes
specialist at the Joslin
Diabetes Center
To examine characteristics of the
transition from pediatric to adult
care in emerging adults with T1D
and evaluate associations between
transition characteristics and
glycemic control
484 mailed surveys, 258
collected (53% response rate)
10 C
12 Gerber, Solomon, Shaffer, Quinn, & Lipton, 2007 United
States of
America
Quantitative; cohort study; no
control; one intervention
group followed; sample
eligibility criteria: fluent in
English, diagnosed with
diabetes prior to 18th birthday,
over 18 years of age at time of
recruitment
To evaluate the effectiveness of
an internet-based transition
support program, STYLE, in an
urban cohort of individuals
between 19-26 years of age
19 participants given
intervention, only 12 attended
feedback sessions for analysis
4 C
13 Hanna et al., 2013 United
States of
America
Quantitative; longitudinal
study; pre-post test design;
three consecutive years of
recruiting students with T1D
in their last 6 months of high
school
To examine: (1) how diabetes
care responsibility changed in
relation to time and living
situation and (2) the association of
diabetes self-efficacy, gender and
glycemic control with changes in
diabetes care responsibility
n = 113 (17-19 year olds with
T1D);
10 B
14 Helgeson et al., 2013 United
States of
America
Quantitative; questionnaire
with repeated samples; time 1
during senior year of high
school; time 2 one year later;
recruited from a previous
study in the Children's
Hospital of Pittsburgh in
2002-2004
To describe the transition of youth
with T1D from pediatric to adult
healthcare services and examine
the link of this transition with
self- care and glycemic control
and distinguish medical treatment
from different physicians
118 adolescents who utilize
either a pediatric
endocrinologist or adult
physician
10 C
15 Hilliard et al., 2014 United
States of
America
Mixed methods; surveys with
open ended questions; pre-
transition group was recruited
from a pediatric diabetes
clinic; post-transition recruited
from 18-22 year olds who
were treated at the same clinic
To describe the concerns,
expectations, preferences, and
experiences of youth and parents
before and after transitioning from
pediatric to adult care.
Pre-transition: adolescents
aged 15-17 with T1D (n=20)
Post-transition: young adults
aged 18-22 (n=59)
9 C
16 Holmes- Walker, Llewellyn, & Farrell, 2007 Australia Quantitative; simple
interrupted time series design;
young adults aged 15-25 with
T1D were referred to the
program that was based at a
tertiary adult referral hospital
in July 2001
To determine if a transition
support program could maintain
attendance at a specialist clinic,
improve diabetes control, and
reduce acute hospital admissions
in 15-25 year olds with T1D
Patients (n=191) referred
were seen in a young adult
diabetes clinic and did not
routinely meet the transition
coordinator or adult diabetes
specialist
4 B
17 Huang et al., 2014 United
States of
America
Quantitative; randomized
Clinical Trial; recruited from
1 pediatric tertiary care
academic medical center
To evaluate whether a internet-
and mobile phone-delivered
disease management intervention
improves disease management,
self-efficacy, and communication
outcomes
Adolescents (n=81) aged 12-
22 with either inflammatory
bowel disease, cystic fibrosis,
or T1D
7 A
18 Kime, 2013 United
Kingdom
Qualitative; focus groups To report on the transition process
and the role of community nurses
in young peoples’ diabetes care
9 acute trusts across
the region and more than 300
participants, parents, and
professionals
7 C
19 Lotstein et al., 2013 United
States of
America
Quantitative; retrospective
cohort study; utilized
SEARCH for Diabetes in
Youth Study data to find those
who completed at least
1 follow up visit after age 18
Describe sociodemographic and
clinical correlates of poor
glycemic control associated with
transfer of care of youth with T1D
diagnosed in adolescence
185 American adolescents
(ages 13-18) with T1D
10 B
20 Lundin, Ohrn, & Danielson, 2008 Sweden Qualitative; ethnographic
approach with formal and
informal interviews;
participants observed from 2
pediatric diabetes clinics and 2
adult diabetes clinics
Describe care culture in pediatric
and adult diabetes outpatient
clinics and implications for care
of adolescents
Observations of 51
participants; interviews of 10
physicians
9 C
21 Markowitz & Laffel, 2012 United
States of
America
Quantitative; pre-post test
design to evaluate group
support program; interested
patients recruited through
flyers
To examine the effects of a group
support program
15 emerging adults with T1D;
ages 18-30
10 C
22 Nakhla, Daneman, To, Paradis, & Guttmann, 2009 Canada Quantitative; retrospective
cohort study; examined health
administrative and survey data
from Ontario Diabetes
Database
Compare rates of DM related
hospitalization & retinopathy
screening before and after
transition to adult care.
1507 young adults with T1D 10 B
23 Neu et al., 2010 Germany Quantitative; pre-post
questionnaire after transition
to adult care; recruited from a
single hospital
Identify the type of clinical care
received by young T1D patients
who transition to adult care, and
assess the metabolic status of long
term treatment after transition
99 patients (28 drop outs,
28.2%)
average age at transition: 21.8
years
10 C
24 Perry, Steinbeck, Dunbabin, & Lowe, 2010 Australia Quantitative; retrospective
cohort study; case note audits
at 6 diabetes clinics
To document diabetes health
services use and indices
of glycemic management of young
people with T1D
239 young adults with T1D
ages 18-28;
10 C
25 Price et al., 2011 United
Kingdom
Qualitative; semi-structured
interviews; recruited from
adolescents attending a
diabetes clinic
To evaluate the transition pathway
in diabetes using qualitative
methods in order to explore the
experiences and suggestions of
the young people
11 young adults aged 16-18
with T1D
8 C
26c Ritholz et al., 2014 United
States of
America
Qualitative; focus group
interviews; recruited from
emerging adults receiving
adult diabetes care at a single
center
To explore perceptions emerging
adults with T1D have of their
patient-provider relationships
across the transition from
pediatric to adult care
Young adults with T1D, 22-
30 years old, diagnosed with
diabetes at ≤18 years of age
(n=26)
8 C
27 Scott, Vallis, Charette, Murray, & Latta, 2005 Canada Mixed-methods; questionnaire
followed by telephone
interview; invitation letters
were sent to former patients of
a tertiary pediatric diabetes
care center
To understand why young adults
drop out of diabetes care during
transition from pediatric to adult
health care and to obtain
information as how the care could
better meet their needs
76 participants returned
questionnaires (33.3%
response rate); 19 telephone
interviews
7 C
28 van Staa, Jedeloo, van Meeteren, & Latour, 2011 Netherlands Qualitative; semi-structured
interviews on young adult
patients and on their parents
and healthcare providers;
potential participants were
randomly selected from a list
of young adult patients
officially discharged in the
previous 2 years
To examine the expectation and
experience with transfer and
perceived quality of care in
pediatric care and adult services
3 of the 24 randomly selected
participants were diagnosed
with diabetes; aged 15-22;
24 parents; 17 healthcare
providers
8 C
29 Van Walleghem, MacDonald, & Dfan, 2008 Canada Quantitative; 2 year
prospective cohort study with
follow up every 6 months;
data gathered from database
review and audit of medical
records
To report clinical outcomes and
identify barriers to care for young
adults with T1D after transfer
from pediatric to adult care
Two cohorts followed:
Younger group aged 18 years
(n=84) from the “Maestro
Project”
Older group aged 19-25
(n=64) who were transferred
to adult care without the
initial support
6 C
30 Vanelli et al., 2004 Italy Quantitative; 8 year
retrospective cohort study;
data gathered from T1D
patients at a hospital
To report the effects of a protocol
for an uninterrupted procedure to
transfer adolescents with T1D
from pediatric to adult clinic in a
hospital
73 patients with T1D, average
age of 26.5 years (sd=2.6)
8 C
31 Wilson, 2010 United
States of
America
Qualitative; semi-structured
phone interviews;
convenience sample recruited
from colleges and universities
To explore the experiences of
young adults managing T1D at
college or university
23 young adults with T1D;
aged 17-19
6 C
a

indicates studies utilizing same dataset or sample

b

indicates studies utilizing same dataset or sample

c

indicates studies utilizing same dataset or sample

Qualitative and quantitative articles were reviewed by the authors and it was determined that the goals and purpose of both quantitative and qualitative studies reviewed were similar (Table 2). The authors identified common objectives of the articles, and the results of the articles were synthesized into the following categories: current status of transitional care, perceptions of transitional care, effects of transitional care on diabetes outcomes, and elements of successful transitional care.

Current Status of Transitional Care

Transition from pediatric to adult health care for adolescents with type 1 diabetes is suggested to occur between the ages of 14 to 25 (de Beaufort, Jarosz-Chobot, Frank, de Bart, & Deja, 2010). Median age of transition is 20.1 years (Lotstein et al., 2013). The majority of providers (90%) are in agreement that transition planning should begin at least one year prior to transition (de Beaufort, et al., 2010). Reasons for transition to adult care are topped by the patient's wish to transition followed by suggestion to transition given by the treating pediatric provider (Neu et al., 2010).

The majority of emerging adults feel prepared for the transition from pediatric to adult diabetes care (Garvey et al., 2013; Neu, et al., 2010). Emerging adults know they will age out of pediatric care, and transition is accepted as an inevitable and a natural process (Begley, 2013; Ritholz, et al., 2014); however, 34% of emerging adults still report a gap of longer than six months between pediatric and adult diabetes care (Garvey et al., 2012). There are noticeable differences between the cultures, communication styles, expectations, and parental involvement in care in pediatric and adult care clinics (Kime, 2013; Lundin, Ohrn, & Danielson, 2008; Ritholz, et al., 2014; van Staa, Jedeloo, van Meeteren, & Latour, 2011). These differences often make emerging adults feel uncomfortable in the adult clinic and incompetent to manage their diabetes without parental support and reassurance (Allen, et al., 2011; Hilliard et al., 2014). Staffing and resource availability were also recognized as major differences between pediatric and adult care clinics. In pediatric care clinics, a multidisciplinary team consisting of a doctor, nurse, dietician, and psychologist met emerging adults along with their parents to discuss a care plan. In the adult clinic, emerging adults met only a doctor during the visit and available resources were limited (Example: “I can't remember the last time I saw a nurse or dietician” (Kime, 2013, p.17)). The visit time in the adult clinic was short (≤5 minutes), and the doctor was not knowledgeable on emerging adults’ past glycemic control history and challenges (Kime, 2013; Lundin, et al., 2008). Within the first two years of adult care, 17% of patients have changed adult providers (Neu, et al., 2010).

Perceptions of Transitional Care

Emerging adults expressed mixed feelings on the transition from a pediatric care clinic to an adult care clinic. Perception of the overall transition preparation was significantly associated with overall satisfaction of the transition (p<0.0001) (Garvey, et al., 2012). Those who felt more prepared for transition were also less likely to report a gap in care (Garvey, et al., 2012). Over 40% of emerging adults do not perceive adult care to be profoundly different from pediatric care; however, some emerging adults reported the experiences in the adult clinic as “shocking” (Ritholz, et al., 2014), and 43.6% express that the treatment in the pediatric clinic was more satisfactory than adult care (Busse et al., 2007). The approaches that lessened the perception of differences in care culture were increased preparation of emerging adults to transition between the clinics (Hilliard, et al., 2014; van Staa, et al., 2011) and the existence of an age-specific transition clinic (e.g. a diabetes clinic for 16-25 year olds) rather than an adult clinic targeting the general adult population (Begley, 2013).

Perceived Differences of Pediatric and Adult Clinics

While emerging adults remembered the pediatric clinic and the relationships with the staff as warm, cozy, and trusted, the adult clinic was perceived as a sterile environment that treated them as a number. Emerging adults reported feeling invisible in the adult clinic (Hilliard, et al., 2014; Lundin, et al., 2008; van Staa, et al., 2011). However, some positive aspects of the adult clinic were also reported. The adult clinic treated emerging adults as autonomous and independent people with self-care responsibilities and fostered partnerships with the health care providers, whereas the pediatric clinic treated them as a child, was parent-centric, and judgmental of glycemic results (e.g., A1C) (Ritholz, et al., 2014). Thus, emerging adults who had a difficulty in achieving optimal glycemic control in the pediatric clinic were often pleased about the transition to adult care and viewed it as opportunity to become more autonomous (Ritholz, et al., 2014).

Health Care Provider's Perception of Successful Transitional Care

Health care providers proposed approaches for successful transitional care including: independently seeing adolescents without parents in a pediatric clinic, developing a transition protocol, using checklists, and making transition plans and organizing a joint consultation with health care providers in the adult and pediatric care clinics (van Staa, et al., 2011). Health care providers acknowledged that enhanced communications between pediatric care teams and adult care teams are essential to improving the quality of transitional care (van Staa, et al., 2011). Almost all doctors reported that they did not meet counterpart health care providers and their communication was by document only (van Staa, et al., 2011). Possible solutions for a tighter bond among the health care team are more staff exchanges, holding consultation meetings before and after the transition, and setting up joint clinics to make a seamless transition (Hilliard, et al., 2014; van Staa, et al., 2011).

Effects of Transitional Care on Diabetes Outcomes

Multiple factors of transitional care had an impact on overall diabetes health outcomes such as glycemic control. The time of transition had an effect on diabetes outcomes. Those who stayed in pediatric care longer (through their senior year of high school) demonstrated better self-care and have significantly lower A1C values than those who transitioned to adult care before or during their senior year of high school (Helgeson et al., 2013). How prepared the emerging adult felt for transition was not associated with improvements in A1C values one year after transition to an adult clinic (Garvey, et al., 2012); however, structured transition programs did show improvement in A1C one year after transition as compared to pre-transition A1C values (Holmes-Walker, Llewellyn, & Farrell, 2007; Vanelli et al., 2004).

Emerging adults who are using an infusion pump for diabetes care perceive greater control of their diabetes than those using multiple injections (p<0.001); however, episodes of hyperglycemia and hypoglycemia do not differ between these groups (Maiorino et al., 2014). The type of adult provider the emerging adult chose did have an effect on post-transition outcomes. Those who chose to see a general practitioner versus an endocrinologist had significantly higher A1C levels (p<0.001) (Busse, et al., 2007). Transition to adult care providers has an effect on diabetes-related hospitalizations. Within four years of transition, 10% of emerging adults are hospitalized for type 1 diabetes related complications (acute hypoglycemia or hyperglycemia). This is a significant increase in hospitalization post-transition as compared to pre-transition (p= 0.03) (Nakhla, Daneman, To, Paradis, & Guttmann, 2009).

Elements of Successful Transitional Care

Pediatric Care Providers’ Roles During Transition

Emerging adults who saw their pediatric provider fewer than three times in the year prior to transition were more likely to wait over six months to transition to an adult provider after discharge from the pediatric provider (Garvey, et al., 2013). Emerging adults identified important discussions to have with the pediatric provider during transition to adult care: objective approaches to managing diabetes in day to day life; subjective recollections of interactions with peers without diabetes regarding diabetes; emotions and stress related to insecurities; concerns about incidences of hypoglycemia and hyperglycemia; and learning how to ask questions of their physicians (Gerber, Solomon, Shaffer, Quinn, & Lipton, 2007; Markowitz & Laffel, 2012).

Early preparation for the emerging adults’ transfer between pediatric and adult clinics was identified as a key for successful transitional care. In this preparation, the role of the pediatrician is very important (Ritholz, et al., 2014). During the time in the pediatric care, emerging adults wanted pediatricians to treat and consult them appropriately with an acknowledgement of their shifting lifestyles and physical growth (Dovey-Pearce, et al., 2005; Ritholz, et al., 2014). When transferring to the adult clinic, emerging adults (as well as their parents) expected pediatricians to provide extensive guidance and consultation about adult care and clinics (Garvey, et al., 2014). Also, emerging adults wanted the pediatricians to be a bridge to find an adult doctor matched with their characteristics and to supervise the overall transition process (Ritholz, et al., 2014).

Parental Role During Transition

Parents often remain a ‘safety net’ or ‘safeguard’ for their children's diabetes self-care during the emerging adult period (Allen, et al., 2011; Hilliard, et al., 2014). Parents and emerging adults both acknowledged the need of preparation for transitional care for not only the emerging adults, but also the parents who played a major role for managing children's diabetes during childhood (Allen, et al., 2011; Hilliard, et al., 2014; van Staa, et al., 2011). There is an assumed transition to complete self-management of diabetes during the transfer to adult care, but this is not reflective of the continued role that parents play in diabetes care well into emerging adulthood. Service structures in adult care that recognize the continuing role of familial support in diabetes management are needed for successful transition (Allen, et al., 2011; Hilliard, et al., 2014; van Staa, et al., 2011).

Structured Transitional Care Programs

It is estimated that only half of diabetes care providers assist their patients through structured transition programs (de Beaufort, et al., 2010); however, structured transitional care reduces the gap between pediatric and adult care. In unstructured transitions, almost half of young adults in pediatric care do not successfully transition to adult care (Scott, Vallis, Charette, Murray, & Latta, 2005). With structured transition there is an average gap of 0.8 ± 0.6 years. Without using a structured transitional program the gap in care increases to 4.6 ± 1.2 years (Cadario et al., 2009).

Age-Specific Transitional Clinic

Emerging adults felt that a standard adult clinic targeting general adults was an unprepared, unwelcoming, and overwhelming place (Garvey, et al., 2014). Instead, they desired to have an age-specific clinic with a systematic and standard protocol (Dovey-Pearce, et al., 2005; Garvey, et al., 2014; Price et al., 2011). The benefits of this age-specific clinic would make young adults feel comfortable without stigma, have more navigable and available resources (e.g., age-specific specialist), and provide developmentally tailored care to meet emerging adults’ education needs (Dovey-Pearce, et al., 2005; Hilliard, et al., 2014; Price, et al., 2011). Some emerging adults expressed that the ideal time for a transition clinic would be from age 14-16 to age 18 (Begley, 2013), while other emerging adults would prefer two transition clinics that span adolescence and emerging adulthood, the first focusing on ages 16-21 and the second ages 22-25 (Dovey-Pearce, et al., 2005).

Emerging adults did not want to hear routine advice (e.g., lose weight); rather, they preferred to have one-on-one time with health care providers to obtain personally centered and age-specific information on topics such as alcohol and drug use and preventive diabetes care (such as foot care and eye examinations). Also, they wished to have an opportunity to explore additional health care resources such as dietetic and psychological services (Dovey-Pearce, et al., 2005; Garvey, et al., 2014; Price, et al., 2011). A transition clinic would allow for these provider interactions and for the exploration of available resources.

Individual Support

In person and technology-based programs to provide individual support to the emerging adult during health care transition were related to favorable outcomes. Professionally led face-to-face support groups with other emerging adults as part of the transition process decreased scores on the Problem Areas in Diabetes (PAID) survey (p=0.02) and increased self-care inventory scores (p=0.09) (Markowitz & Laffel, 2012). Emerging adults participating in technology-based programs felt that they had greater diabetes control (Gerber, et al., 2007), showed significant improvements in disease management and health-related self-efficacy (Huang, et al., 2014), and had lower rates of long term complications (pregnancy loss, heart failure, blindness, amputation, and death) (Van Walleghem, Macdonald, & Dean, 2008).

One transitional care program in Italy tried to ensure care continuity by introducing the adult care provider to the emerging adult before transition, having the pediatric care provider come to the first adult care appointment, and ensuring the same adult care provider worked with the emerging adult through the first year of transition. In this program, A1C one year post transition was lower than that at the time of pre-transition (Vanelli, et al., 2004).

College Transition

Emerging adults reported that years in college were an especially difficult period to manage their diabetes (Wilson, 2010). They often moved out of their parents’ home and lived independently (Hilliard, et al., 2014; Wilson, 2010); thus, making medical appointments, monitoring supplies, and refilling prescriptions became the responsibility of the emerging adult without parental support (Hilliard, et al., 2014). Social networks are changed, social events (e.g., alcohol consumption, missing injection opportunity) are increased, and new behaviors are adopted (e.g., engaging in sexual behavior) in this period (Garvey, et al., 2014; Wilson, 2010). Unfortunately, a new doctor affiliated with the adult clinic emphasizes “better” self-management behaviors but often does not understand emerging adults’ new challenges in college or their past glycemic control history. Thus, emerging adults felt unaided from the doctor's appointment at the adult clinic (Garvey, et al., 2014; Wilson, 2010).

Adult Care

Once a transition to adult care was completed, those emerging adults receiving care from an adult endocrinologist were more likely to report routine preventative care visits as compared to those receiving diabetes care from a general internist or adult primary care provider (Garvey, et al., 2013). The number of visits to the provider also differed based on the location of the adult care provider (urban, suburban, or rural). Routine preventative care visits were significantly higher in urban and suburban areas compared to rural areas (p<0.001) (Perry, Steinbeck, Dunbabin, & Lowe, 2010). For health care providers in adult clinics, the emerging adults wanted doctors to differentiate them from older adults (Garvey, et al., 2014). They desired one-on-one time with the health care providers to receive full consultations without any interruption (Dovey-Pearce, et al., 2005). Emerging adults did not want to be burdensome to providers, but expressed educational needs regarding independent care planning and management since previous care in the pediatric care clinic was mainly planned and managed by the parents (Allen, et al., 2011; Hilliard, et al., 2014). Emerging adults identified staff qualified for their care as those members of the care team who have consistent contact, civility, rapport, and good listening skills. Providers should also give options and provide honest feedback (positive and negative feedback). Finally, care providers need to be approachable, non-judgmental, and knowledgeable about developmental challenges (Dovey-Pearce, et al., 2005). Emerging adults who dropped out of adult care reported difficulty scheduling appointments, knowing who to see, and establishing relationships with the new team. They also expressed feeling overwhelmed and lost in the system and a lack of perceived value of adult care (Van Walleghem, et al., 2008).

Discussion

Looking at the synthesis of the results, the authors identified four overarching themes and practice implications that emerged from the review of the transitional care literature for emerging adults with diabetes (Table 3): differences between pediatric and adult care cultures; pediatric preparation for transition; structured transitional care programs; and suggestions for successful transition. There are many differences in care culture between pediatric and adult clinics including environment, communication, expectations of the patient, parental involvement, staffing, resource availability, and knowledge of the patient's history (Allen, et al., 2011; Hilliard, et al., 2014; Kime, 2013; Lundin, et al., 2008; Ritholz, et al., 2014; van Staa, et al., 2011). For many emerging adults these differences in care culture can create difficulties during transition between the pediatric and adult clinic settings.

Table 3.

Overarching Themes and Practice Implications

Theme Overall Findings References Practice Implications
Difference between pediatric and adult care Differences in the care culture between pediatric and adult clinics: environment, communication, expectations of patient, parental involvement, staffing, resource availability, and knowledge of the patient's history. Allen, Channon, Lowes, Atwell, & Lane, 2011; Hilliard et al., 2014; Kime, 2013; Lundin, Ohrn, & Danielson, 2008; Ritholz et al., 2014; van Staa, Jedeloo, van Meeteren, & Latour, 2011 -Pediatric provider: prepare the patient for differences in care cultures
-Adult provider: modify care to meet the needs of the emerging adult.
Pediatric Transition Preparation Strong provider relationship is associated with: feeling more prepared for transition, higher transition satisfaction, and smaller gap in care Dovey-Pearce, Hurrell, May, Walker, & Doherty, 2005; Gerber, Solomon, Shaffer, Quinn, & Lipton, 2007; Garvey et al., 2012; Garvey et al., 2013; Markowitz & Laffel, 2012; Neu et al., 2010, Ritholz et al., 2014 -Pediatric provider: engage emerging adult during visits, provide personally centered information, and discuss transitional care.
Structured Transitional Care Programs Structured transitional care programs are associated with: better glycemic control, smaller gaps in care, greater perceived diabetes control, improvements in health-related self-efficacy and self-care, and fewer long term complications Cadario et al., 2009; Gerber, Solomon, Shaffer, Quinn, & Lipton, 2007; Holmes-Walker, Llewelyn, & Farrell, 2007; Huang et al., 2014; Markowitz & Laffel, 2012; Vanelli et al., 2004; Van Walleghem, MacDonald, & Dfan, 2008 -Pediatric provider: provide patients with and assist patients through a structured transition program
-Adult provider: know patient's history and transition program, and modify care to meet emerging adult's needs during transition
Health Care Transition Suggestions Suggestions for successful transition include: enhanced communication between pediatric and adult care providers, age-specific clinics designed to aid in transition, and adult providers tailoring information for emerging adults’ concerns. Allen, Channon, Lowes, Atwell, & Lane, 2011; Dovey-Pearce, Hurrell, May, Walker, & Doherty, 2005; Garvey et al., 2014; Hilliard et al., 2014; Price et al., 2011; van Staa, Jedeloo, van Meeteren, & Latour, 2011 -Pediatric and adult care provider: communication before and after transition
-Create transition clinics
-Adult provider: provide information specific for emerging adults

Pediatric providers should actively prepare the emerging adult for these differences, and adult providers may need to modify the care plan to meet the individual needs of the emerging adult. Emerging adults who have a strong relationship with their pediatric provider feel more prepared for transition, are more satisfied with their transition, and are less likely to report a gap in care. Strong relationships are those in which the emerging adult sees their provider on a regular basis, the emerging adult and provider engage in conversations about diabetes concerns, and the provider acknowledges changes in the emerging's adults lifestyle that may affect their diabetes management (Dovey-Pearce, et al., 2005; Garvey, et al., 2013; Garvey, et al., 2012; Gerber, et al., 2007; Markowitz & Laffel, 2012; Neu, et al., 2010; Ritholz, et al., 2014). The pediatric provider can increase the chance for a successful transition by engaging the emerging adult during visits, providing personally centered information, discussing transitional care, and implementing a structured transitional care program. Structured transitional care programs and individual support, such as support groups and technology-based programs, are related to better glycemic control, smaller gaps in care, greater perceived diabetes control, improvements in health-related self-efficacy and self-care, and fewer long term complications (Cadario, et al., 2009; Gerber, et al., 2007; Holmes-Walker, et al., 2007; Markowitz & Laffel, 2012; Van Walleghem, et al., 2008; Vanelli, et al., 2004).

Despite the benefits of structured care, it is estimated that only half of pediatric diabetes care providers assist their patients through structured transition programs (de Beaufort, et al., 2010), and without structured transitions almost one-half of emerging adults in pediatric care do not successfully transition to adult care (Scott, et al., 2005). Suggestions to increase successful transitions include enhanced communication between pediatric and adult care providers, age-specific clinics designed to aid in transition, and adult providers tailoring care for emerging adults’ concerns (Allen, et al., 2011; Dovey-Pearce, et al., 2005; Garvey, et al., 2013; Hilliard, et al., 2014; Price, et al., 2011; van Staa, et al., 2011). These suggested approaches may improve the success of health care transition for emerging adults with diabetes, but further study is needed to determine the effect of these practices.

Limitations of the current research include the gap of knowledge relating to transitional care needs of individuals with type 2 diabetes or prediabetes and the need for more intervention studies in all groups. Additionally there is a lack of attention to vulnerable subgroups that may have challenges such as access to care, poverty, and limited resources for optimal diabetes treatment. Data collected in the in transitional care studies is not consistent; thus, results of these studies are often difficult to compare. Using a consensus model to guide studies would improve the consistency of reported data and allow for more comprehensive conclusions.

Recent reviews and reports on transitional care emphasize the need for consistent transitional care goals in order to develop and evaluate interventions. (Prior, McManus, White, & Davidson, 2014) completed a systematic review based upon the Triple Aim framework developed by the Institute for Health Care Improvement (Berwick, Nolan, & Whittinghton, 2008). This framework is organized around three interdependent goals: improving the individual experience of health care, improving the health of populations, and reducing the per capital costs of care (Berwick, et al., 2008) (Prior, et al., 2014). Prior et al. evaluated transition interventions for youth with chronic conditions (n=33), 12 of which included patients with type 1 diabetes. Out of the 12 studies included in the Prior et al. review, four were included in our systematic review (Cadario, et al., 2009; Holmes-Walker, et al., 2007; Markowitz & Laffel, 2012; Van Walleghem, et al., 2008). The other eight studies did not meet our inclusion criteria, such as key words, publication date, or not being accessible via database searches used. In summary, Prior et al. concluded that transition programs are inconsistently evaluated using the Triple Aim framework and that a more unified approach including applicable measures is needed. The 2014 report on “Transition Care for Children with Special Health Needs” also concluded that transitional care lacks a consistent and accepted way of measuring transition success (Mcpheeters et al., 2014).

The current review illuminated that the majority of research in diabetes transitional care is descriptive in nature (Level C: n=24). In order to address the ongoing challenges and gaps in care delivery, future studies need to develop and evaluate interventional programs that thoroughly investigate transitional care from all perspectives including cost analysis. Well-designed studies will guide the formation of a consensus model for implementing transitional care into routine practice for emerging adults with diabetes or who are at risk for developing diabetes.

The current review also revealed that much of the research on transitional care for emerging adults with diabetes has been conducted outside of the United States (Table 2). While this international research is certainly still valid and applicable to the Unites States, it is interesting that there have been position statements developed by the American Academy of Pediatrics (Cooley & Sagerman, 2011) and the American Diabetes Association (Peters & Laffel, 2011) without further testing these interventions in United States clinic populations. Because research has not kept pace with the current position statements, additional study is needed to evaluate the aspects of care outlined in these position statements. According to the synthesis of available studies on transitional care, current protocols developed by proponents of these position statements are not yet being followed. A recent publication of the American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians (AAP/AAFP/ACP) Clinical Report on Transition from Adolescence to Adulthood (Cooley & Sagerman, 2011) focuses on the initiation of a planned transition process, beginning at ages 12-14 years, in hopes of making it a part of routine primary and specialty care. McManus and colleagues (2015) reported that published transition studies have not incorporated this 2011 Clinical Report recommended algorithm. McManus conducted an intervention with five large academic primary care practices in the District of Columbia to promote the use of a 2-year learning collaborative to improve transition services for youth with chronic conditions. Training consisted of five 1 ½ day sessions combined with coaching via phone calls and on-site visits for each team consisting of a physician, care coordinator (nurse, social worker, family navigator) and a consumer (parent/caregiver or young adult). Coaching was implemented using the Six Core Elements of Transition from the federally funded national resource center on transition (www.GotTransition.org), which defines a sequential process and aligns with the algorithm in the Clinical Report. As a result of this intervention, all sites developed a practice policy on transition and an organized process for tracking transition preparation. Approximately 73-88% of eligible youth (n = 400) and young adults (n = 128) were assessed for transition readiness with transition plans prepared for 29-33%. This research supports the use of an organized approach for transition from pediatric to adult health care and potential for improvement in outcomes for young adults with chronic conditions. Nurses are integral members of team-based care for adolescents and emerging adults with diabetes, possess the knowledge and skill regarding their developmental concerns, and can lead in program development and evaluation for structured approaches to transitional care delivery.

Transitional care program development must also address a major gap in the existing literature, the lack of research addressing the needs of the growing numbers of emerging adults with type 2 diabetes or prediabetes. This review included type 2 diabetes and prediabetes in its literature search (Figure 1) but found no studies pertaining to transitional care for these populations. This is particularly concerning given the 30.5% increase in prevalence for type 2 diabetes from 2001 to 2009 (Hamman, et al., 2014) and the projected 178% increase in youth with type 2 diabetes by 2050 (Imperatore et al., 2012). The American Diabetes Association (2015) has recommendations for screening youth for prediabetes and type 2 diabetes. These recommendations are for youth who are overweight and have two of the following risk factors: family history of type 2 diabetes in first or second-degree relatives; race/ethnicity of Native American, African American, Hispanic, Asian American or Pacific Islander; signs of insulin resistance (acanthosis nigricans, hypertension, dyslipidemia, polycystic ovarian syndrome, or small for gestation-age birth weight); or maternal history of diabetes or gestational diabetes during the child's gestation. This screening needs to continue beyond pediatric care and into emerging adulthood to prevent long term diabetes complications. Type 2 diabetes and prediabetes transitional care are likely to mirror type 1 diabetes transitional protocols in suggestions for diet, activity, and glucose control. Additionally after screening for comorbidities at diagnosis, the ADA position statement suggests that screening guidelines and treatment recommendations for hypertension, dyslipidemia, albumin excretion, and retinopathy in adolescents with type 2 diabetes are essentially the same as those with type 1 diabetes (American Diabetes Association, 2015). However, type 2 diabetes and prediabetes transitional care will most likely need to incorporate additional elements that will not be identified without research in this population. The Treatment Options for type 2 Diabetes in Adolescents and Youth (TODAY) study reported that youth with type 2 diabetes experience complications and comorbidities that are similar to those seen in adults (hypertension, high LDL-cholesterol, micoalbuminuria, and retinopathy) but on an accelerated timeline. This acceleration in complications suggests that cardiovascular disease, nephropathy, and retinopathy may be prevalent in this group during their 30's and 40's (Tryggestad & Willi, 2015). These life threatening complications and comorbidities make transitional care even more important for emerging adults with type 2 diabetes. Aggressive treatment needs to be continued from pediatric into adult care without the gap in care that is prevalent today.

In summary, this systematic review sought to examine the extent and quality of evidence for the process and outcomes of transitional care programs for adolescents and emerging adults with either type 1 diabetes, type 2 diabetes, or prediabetes with the intent to inform clinicians, researchers, and policy makers of key components of a model of high quality transitional care. This review revealed that the majority of current studies are descriptive in nature and many are conducted outside of the United States. There are no studies that address type 2 diabetes or prediabetes transitional care. Key components of transitional care practices that are associated with positive outcomes are structured transitional care programs, individual support (in person or technology based), and strong relationships with providers (physicians, nurses, dieticians). In order to develop a consensus model for implementing transitional care into routine practice quality research incorporating all perspectives must be conducted and evaluated systematically. This research is essential in creating a seamless system of care for emerging adults with diabetes, to enhance individual quality of life and help to prevent long term diabetes complications and comorbidities.

Highlights.

  • Available studies focus on adolescents or emerging adults with T1D.

  • Studies on the unique needs of adolescents and emerging adults with T2D and prediabetes are needed.

  • Structured transitional care programs are associated with better glycemic control.

  • Future research should incorporate recommendations of leading pediatric organizations.

Acknowledgements

The project was supported by Grant Number T32NR01275 from the National Institute of Nursing Research. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research or the National Institutes of Health.

Footnotes

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