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Acute complications 
Acute complications studied will be severe hypoglycemia and DKA.  Severe 
hypoglycemia is defined as a hypoglycemia event requiring assistance of another person 
(32)
.  For diabetic ketoacidosis, occurrence will be recorded as a) emergency department 
visit or b) hospitalization.  This aligns well with prior publications on acute 
complications, and data frequently recorded in patient surveys and medical records 
(33)
.  
Current data are not available on comparing self report of acute events to medical records 
or administrative data.  By separately collecting data on ED visits and hospitalizations, 
we will be positioned to conduct a validation sub-study of self-report of acute 
complications. 
5.1.11.
 
Diabetes treatment regimen and related technologies 
Diabetes Treatment Regimen and Related Technologies will be assessed, to include oral 
hypoglycemic agents, insulin regimen (including use of continuous subcutaneous insulin 
infusion, CSII), and glucose monitoring (including actions taken as a result of actual 
glucose values).  With the recent introduction of continuous glucose monitoring (CGM) 
into clinical practice, we also query use of these devices 
(34, 35)
.   
5.1.12.
 
Psycho-social factors 
We will use the Pediatric Quality of Life Inventory (PedsQL) 
(36)
 and the Center for 
Epidemiologic Studies-Depression (CES-D) scales 
(37)
.  The CES-D scale will be 
administered to all youth 
≥ 10 years of age at the time of the visit 
(38)
.  We will add 
psychosocial measures that are specific to the goal of achieving and maintaining good 
glycemic control.  One barrier to attaining this goal is fear of hypoglycemia.  The 
Hypoglycemia Fear Survey (HFS) includes a “worry subscale” and a “behavior subscale” 
(39)
 with versions developed to use with children with type 1 diabetes (HFS-C) 
(40)
 and 
their parents (HFS-P) 
(41)
.  Additionally, we will administer the Diabetes Family 
Interaction Scale to assess diabetes-specific family conflict 
(42)
. 
We will administer the Diabetes Eating Problem Survey-Revised (DEPS-R) and single 
item, “I take less insulin that I should.”  Youth with diabetes are at high risk of disordered 
eating behaviors (DEB).  Amongst individuals with diabetes, insulin restriction is a 
unique strategy to induce weight loss.  Concurrent DEB and type 1 diabetes carries 
significant metabolic consequences in young adulthood including poor glycemic control 
and increased risk of micro-vascular complications. 
(43, 44)
  We propose inclusion of these 
17 items to the SEARCH 3 visit to provide valuable data about prevalence of co-morbid 
DEB in patients undergoing transition of care.  

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Section 5B - Data Collection (Phase 3 - 1/2011, rev. 8/2011) 
Section 5B - Page 9 
 Cohort 
Study
 
5.1.13.
 
Socio-cultural factors 
We will query household income, per capita income, family structure, preferred 
language, migration status, and parental and participant-attained education.   
5.1.14.
 
Processes of care 
We will query the type and frequency of seeing health care providers (for diabetes and 
for primary care), processes of diabetes self-management training, and recent 
hospitalizations.  Quality of Care is assessed based on ADA guidelines for pediatric and 
adult diabetes care in terms of testing frequency for A1c, blood pressure, lipids, and urine 
albumin 
(45)
.  We will use questionnaire instruments used in SEARCH Phases 1 and 2 to 
assess quality of care.  Receipt of services will be measured by self-report by parents 
(patient age <18) or adult patients (age > 18). 
5.1.15.
 
Barriers to care 
Barriers to care will be measured via items from the Consumer Assessment of Healthcare 
Providers and Systems survey (CAHPS 3.0) Supplemental Item Set for Children with 
Chronic Conditions and one additional item to assess foregone care (care not received 
that parents thought was necessary) 
(46)
.  We will assess access, cost, and interaction 
barriers. 
5.1.16.
 
Transition to adult care: assessment of care will be assessed in four topic areas 
i)
 
Topic 1: Preparation for transition - We will use select questions from the 
National Survey of Children with Special Health Care Needs to answer key 
questions about preparation for transition.  Using these questions will allow 
comparison between National Survey and SEARCH.  These questions would only 
be asked of those who are still in Pediatric DM care.  We will consider adding 
some of these questions to the survey for youth ≥ 10 years of age in addition to 
administering to the parent/guardian of youth >10.  
ii)
 
Topic 2: Determining that a change from pediatric to adult provider has occurred.  
We will use the SEARCH Annual Health Questionnaire used in SEARCH Phase 
2 to address this topic.  An analysis from SEARCH data showed that 55% of 
respondents reported a change in provider between the age of 17 and 24 with a 
mean age for transfer of 19.1 years with SD 1.7 years.  These data suggest that the