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Behavioral factors.  Helgeson et al 
(107)
 reported high dietary fat intake among youth 
with T1DM.  Regarding physical activity, a majority of youth with T1D from a 
Norwegian cohort did not meet physical activity recommendations 
(108)
, and lower 

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physical activity was associated with higher A1c and worse lipid profile 
(109)
.  From 
SEARCH, dietary intake of adolescents with T1DM is high in total and saturated fat, 
and low in fiber, fruits and vegetables compared to current nutrition recommendations 
(110)
, with similar patterns among those with T2D.  In youth with T1D, a higher 
adherence to DASH diet was inversely related to hypertension 
(111)
.  Also, substantial 
proportions of youth with either T1 or T2D across race/ethnic groups engaged in less 
physical activity than recommended 
(6-8)
.  Of major concern, prevalence of current 
smoking ranged from 12-20% for T1D adolescents, and from 13-26% among T2D 
adolescents across race/ethnic groups 
(6-9)
. 
Summary.  The SEARCH Cohort Study will provide comprehensive information on 
the prevalence and incidence of key metabolic, psychosocial, and behavioral risk 
factors, and their association with acute and chronic complications of diabetes, and 
diabetes-related quality of life.  These phenomena will be evaluated in a socio-
cultural context, particularly considering race and ethnicity. 
4.2.1.3.
 
Effect of Barriers, Care Quality, and Transition to Adult Care on Outcomes 
Timely receipt of high quality health care is important for children with special health 
care needs (CSHCN), 
(112-115)
 including diabetes.  However, a chasm exists between 
ideal and actual care 
(116 - 118)
 among those of minority race/ethnicity and low 
socioeconomic status who continue to face barriers to quality health care 
(119 - 122)
 and 
health disparities, 
(123)
 including diabetes-related mortality 
(124)
. 
Data from SEARCH demonstrate that a substantial proportion of parents report 
barriers to care including cost of care (41.2%) and medication (25.2%), not receiving 
family-centered care (31.3%), and problems communicating with doctors (43.3%) 
(125)
.  Being from a racial or ethnic minority group and having a lower income were 
associated with less access to care and reduced adherence to ADA guidelines for care.  
Further study is needed to elucidate the relationship of quality of care to outcomes, 
and specific barriers to care experienced by participant groups who most often do not 
receive recommended care. 
To address this issue, we adapted a conceptual model describing children’s 
interactions with the health care system and how barriers to high quality care reduce 
the likelihood of improved health outcomes of importance to diabetes 
(126)
, and 
incorporated this model into the overall conceptual framework of the SEARCH 
Cohort Study (see Figure 3, Section 4B.)  Barriers to care interact in very complex 
ways with biological and social factors, sometimes as confounders, other times they 
act as mediators, and occasionally they can modify the associations of interest.  
Commonly, clusters exist of biological, social and system-related risks.  Our model 
hypothesizes a direct effect of biological risk factors on outcomes, and further 
proposes that barriers to care, quality of care, transition of care, and behavioral risk 

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factors can affect biological factors over time, thereby altering outcomes.  Finally, the 
model hypothesizes a link between socio-cultural factors (e.g. race/ethnicity) and both 
biological risk factors (e.g. dimensions of diabetes type) and mediators (e.g. barriers 
to care).  
Transition of care from pediatric to adult health care is a dynamic process that seeks 
to meet the health care needs of each person as he or she moves from childhood to 
adulthood 
(1)
.  In contrast, ‘transfer of care’ denotes the single event of changing from 
a pediatric to an adult provider.  Very little epidemiological research has been 
published that had examined the processes or outcomes associated with transition or 
transfer of care.  Several publications describe transition of care focusing on specific 
programs for individuals with a chronic disease 
(113 - 118)
.  These studies are 
qualitative.  They describe the average age of transfer of care as 18 years (range 13-
25 yrs) 
(121, 126 - 127)
, deterioration in obtaining clinical care with a decrease in the 
frequency of health care visits and an increase in hospitalization rates 
(11, 28, 128)
, 
variation in glycemic control 
(8, 120)
, and no change in the frequency of adverse 
outcomes including hypoglycemia or diabetic ketoacidosis 
(128, 129)
.  This literature 
suggests that programs utilizing transition clinics had the greatest success 
(122, 123, 130)
.  
Importantly, all of these studies describe experience of transition outside the US 
where health care systems are quite different 
(119 - 134)
.  In the United States, concerns 
about losing health insurance and the potential effect of under-insurance on young 
adults with chronic health conditions has been a major consideration in research on 
transition to adult care 
(130)
.  However, with the passage of comprehensive health 
reform in March 2010, young adults may continue on their parents’ insurance until 
the age of 26 years if they do not have jobs that offer health insurance and if they can 
still be claimed as dependents on their parents’ taxes, regardless of whether they are 
students or are employed.  An opportunity exists to study how this new national 
policy may affect transition of care for young adults with diabetes by comparing 
SEARCH participants who transferred care before, versus after, health care reform is 
initiated.   
Specifically from SEARCH, for individuals age 17 or older participating in the 
SEARCH 2001 prevalent cohort Quality of Care Survey, 66% of those with T1D 
reported seeing an adult provider as the main source of diabetes care, and 57% 
reported having discussed the transition to adult care with their health care provider.  
For T2D, 85% were seeing an adult provider, and 49% reported having discussed 
their transition of care.  The median age of transition of care was 18 yr for T1D, and 
19 yr for T2D.  
Given the crucial role that high-quality care plays in health outcomes, understanding 
the effect of barriers to care and health-care quality on diabetes outcomes over time is 
critically important.  Determining which barriers or aspects of quality affect outcomes 

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for which groups of individuals, how these processes interact with transition from 
pediatric to adult diabetes care, and whether and how new health insurance rules 
affect the transition process, would enable researchers to develop interventions to 
improve outcomes for youth with diabetes.  Study of transfer of care before and after 
health care reform highlights a major strength of this proposal - the ability to test new 
research questions seamlessly within the existing structure SEARCH. 
4.2.1.4.
 
Summary of Significance of the SEARCH Cohort Study to the Field of 
Childhood Diabetes 
Across a wide range of topics including biological, behavioral, and socio-cultural 
characteristics, processes of health care and quality of care, the SEARCH study has 
already substantially contributed to our understanding of the impact of diabetes in 
youth.  The SEARCH Cohort Study will add estimation of complications in the 
modern era of treatment, and allow exploration of a wide variety of interacting 
biological, socio-cultural and health care factors that may alter the risk of such 
complications.  Our findings will significantly inform clinical and public health 
practice and policy, as well as provide direction to new research, all targeted to 
reduce the impact of diabetes on the health and well-being of youth with diabetes. 

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Reference List 
 
1.
 
Pambianco G, Costacou T, Ellis D, Becker DJ, Klein R, Orchard TJ. The 30-year natural 
history of type 1 diabetes complications: the Pittsburgh Epidemiology of Diabetes 
Complications Study experience. Diabetes 2006 May;55(5):1463-9. 
2.
 
Incidence and trends of childhood Type 1 diabetes worldwide 1990-1999. Diabet Med 
2006 Aug;23(8):857-66. 
3.
 
The SEARCH for Diabetes in Youth Study Group. Incidence of Diabetes in United States 
Children and Adolescents: The SEARCH for Diabetes in Youth Study. <[11] Journal> 
2005;54 (Suppl 1). 
4.
 
Dabelea D, Bell RA, D'Agostino RB, Jr., Imperatore G, Johansen JM, Linder B, Liu LL, 
Loots B, Marcovina S, Mayer-Davis EJ, Pettitt DJ, Waitzfelder B. Incidence of diabetes in 
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5.
 
Liese AD, D'Agostino RB, Jr., Hamman RF, Kilgo PD, Lawrence JM, Liu LL, Loots B, 
Linder B, Marcovina S, Rodriguez B, Standiford D, Williams DE. The burden of diabetes 
mellitus among US youth: prevalence estimates from the SEARCH for Diabetes in Youth 
Study. Pediatrics 2006 Oct;118(4):1510-8. 
6.
 
Mayer-Davis EJ, Bell RA, Dabelea D, D'Agostino R, Jr., Imperatore G, Lawrence JM, Liu 
L, Marcovina S. The many faces of diabetes in American youth: type 1 and type 2 diabetes 
in five race and ethnic populations: the SEARCH for Diabetes in Youth Study. Diabetes 
Care 2009 Mar;32 Suppl 2:S99-101. 
7.
 
Bell RA, Mayer-Davis EJ, Beyer JW, D'Agostino RB, Jr., Lawrence JM, Linder B, Liu LL, 
Marcovina SM, Rodriguez BL, Williams D, Dabelea D. Diabetes in non-Hispanic white 
youth: prevalence, incidence, and clinical characteristics: the SEARCH for Diabetes in 
Youth Study. Diabetes Care 2009 Mar;32 Suppl 2:S102-S111. 
8.
 
Lawrence JM, Mayer-Davis EJ, Reynolds K, Beyer J, Pettitt DJ, D'Agostino RB, Jr., 
Marcovina SM, Imperatore G, Hamman RF. Diabetes in Hispanic American youth: 
prevalence, incidence, demographics, and clinical characteristics: the SEARCH for 
Diabetes in Youth Study. Diabetes Care 2009 Mar;32 Suppl 2:S123-S132. 
9.
 
Dabelea D, DeGroat J, Sorrelman C, Glass M, Percy CA, Avery C, Hu D, D'Agostino RB, 
Jr., Beyer J, Imperatore G, Testaverde L, Klingensmith G, Hamman RF. Diabetes in 
Navajo youth: prevalence, incidence, and clinical characteristics: the SEARCH for 
Diabetes in Youth Study. Diabetes Care 2009 Mar;32 Suppl 2:S141-S147. 
10.
 
Liu LL, Yi JP, Beyer J, Mayer-Davis EJ, Dolan LM, Dabelea DM, Lawrence JM, 
Rodriguez BL, Marcovina SM, Waitzfelder BE, Fujimoto WY. Type 1 and Type 2 diabetes 
in Asian and Pacific Islander U.S. youth: the SEARCH for Diabetes in Youth Study.