Journal of Diabetes and Clinical Practice

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Journal of Diabetes and Clinical

Practice Tonyushkina, et al., J Diabetes Clin Prac 2018, 1:1

Research Article Open Access

Diabetes Knowledge in Youth with T1DM and their Caregivers-A Cross-


Sectional Study
Moskovitz A1, Alex Knee MS2, Frydman E1, Allen H1 and Tonyushkina K1*
1Department of Pediatrics, Baystate Health, Springfield, USA
2Department of Epidemiology and Biostatistics, Baystate Health, Springfield, USA
*Corresponding author: Ksenia Tonyushkina, Pediatric Subspecialty Center Baystate Health, 50 Wason Ave, Springfield MA, 01199, USA, Tel: 413-794-3510; E-mail:
[email protected]
Received date: Jan 24, 2018; Accepted date: Feb 09, 2018, Published date: Feb 12, 2018
Copyright: © 2018 Moskovitz A, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Abstract

Purpose: The purpose of this study was to evaluate diabetes knowledge in youth with T1DM and their caregivers
and its association with clinical outcomes, demographic, and socioeconomic characteristics.

Methods: A cross-sectional analysis was conducted. Patients with T1DM aged 2 to 21 were enrolled. A diabetes
knowledge questionnaire adapted from a combination of validated studies was completed by adolescents ≥ 14 years
and caregivers of children ˂14 years. Diabetes knowledge was considered adequate for ≥ 80% correct answers.
Logistic regression was used to associate diabetes knowledge with clinical and demographic data.

Results: Overall diabetes knowledge was good, with average scores of 86% and 84% correct responses among
adolescents and parents, respectively. Better diabetes knowledge was associated with A1C ≤ 9%, in particular
knowledge of nutrition in parents of small children and knowledge of pathophysiology in both groups. Weaker
diabetes knowledge was associated with lower socioeconomic status. Overall diabetes knowledge scores were not
associated with time since T1DM diagnosis, but knowledge of self-care was better with longer time since diagnosis
in adolescence.

Conclusions: Proficiency in carbohydrate counting in parents of younger children might have higher clinical
impact than in adolescents. Diabetes education curricula should be tailored towards individual patients taking into
consideration their socio-economic needs. Diabetes centers should offer re-education on diabetes, in particular,
review of pathophysiology, nutrition and carbohydrate counting.

Keywords: T1DM; Pediatric diabetes; Diabetes education education of patients with diabetes, which fall into the following
categories: Medical nutrition therapy, physical activity, and smoking
Abbreviations: DSMS: Diabetes Self-Management Skills; DKA: cessation.
Diabetes Ketoacidosis; ADK: Adequate Diabetes Knowledge; ADA: ADA guidelines remain vague with respect to how exactly patients
American Diabetes Association with diabetes should be educated about their disease, and different
clinics have developed site-specific curricula for their patients with
Introduction diabetes. While many studies have demonstrated that better adherence
to treatment guidelines is correlated with better control of patient’s
Type 1 diabetes is one of the most prevalent chronic health A1C [4], and may consequentially mitigate their risk of developing
conditions in youth around the globe [1]. Although treatment of type 1 complications associated with chronically elevated blood glucose later
diabetes has improved dramatically over the past few decades with the in life, the role that education plays in this effect has not been
implementation of intensive insulin treatments and the advent of thoroughly investigated.
insulin pumps and continuous glucose monitors, many pediatric
patients are unable to maintain recommended A1C levels and are at Several studies have analyzed the logical connection between
increased risk of developing complications [2]. patients’ knowledge of diabetes and their self-management of the
condition (most frequently quantified by A1C values). One study
Diabetes treatment often requires complex regimens including found that patients who knew their recent A1C values also
calculation of the carbohydrate content of meals as well as frequent demonstrated better glycemic control [5], but findings in other studies
self-administration of insulin, therefore it is essential that people living have been inconsistent regarding this association [6,7].
with diabetes are well educated about their condition and make
confident decisions regarding their own treatment. In the current A recent study found that lower A1C values are associated with
standards of care in diabetes treatment, the American Diabetes greater knowledge of diabetes [8], however a previous study did not
Association (ADA) places particular emphasis on the importance of find a significant correlation between these two variables [7].
diabetes self-management education and diabetes self-management Importantly, the most effective way to educate patients in order to
support [3]. Prominent in its outline are specific goals for the improve their outcomes remains unclear. It is also unknown what

J Diabetes Clin Prac, an open access journal Volume 1 • Issue 1 • 1000101


Citation: Moskovitz A, Alex Knee MS, Frydman E, Allen H and Tonyushkina K (2018) Diabetes Knowledge in Youth with T1DM and their
Caregivers-A Cross-Sectional Study. J Diabetes Clin Prac 1: 101.

Page 2 of 7

specific elements of a diabetes education curriculum are essential for


better clinical outcomes.
In this study, we sought to evaluate diabetes knowledge in youth
with T1DM and their caregivers and its association with clinical
outcomes. We hypothesized that better diabetes knowledge is
associated with a lower A1C. We attempted to determine predictors of
adequate diabetes knowledge.

Methods
Study design/sample: To study diabetes knowledge in children with
T1DM and their caregivers and its association with clinical outcomes,
we conducted a cross-sectional descriptive study and approached all
patients with T1DM aged 2-21 who had been diagnosed for at least 3
months coming for their routine follow-up appointments in our clinic
during 2011-2012 (~750 clinic patients). Patients in state custody were
excluded from the study. Our study included two groups of
respondents: Adolescent participants aged 14 years and older and
caregivers of the younger children.

Setting
This study was performed at a moderately sized outpatient pediatric
diabetes program located at an academic tertiary health care center in
Springfield, Massachusetts. The program offers comprehensive diabetes
education by certified diabetes educators and a registered dietitian that
consists of an introductory 3-month course and ongoing
individualized review sessions.
The initial in-depth course includes intense 3-4 hour sessions on Figure 1: Diabetes knowledge questionnaire.
two consecutive days that cover pathophysiology of diabetes, diabetes
self-management skills (DSMS) and diabetes diet. Published [9] and
self-developed diabetes education materials are used as a reference and
are provided to the families. The initial 2-day course is followed by Outcome measures
daily phone nurse/physician interaction with the family for the first Diabetes knowledge surveys were scored as the percentage of
week, and clinic visits after 1 week, 1 month, and 2 months. correct responses. Subjects were categorized as having adequate
Patients also meet with a pediatric endocrinologist at all diabetes knowledge if scores were ≥80% correct (B or greater in the
appointments who adjusts insulin doses and guides diabetes education. conventional US grading system). Scores are reported as the percent
Beyond the initial 3-month period, patients are followed quarterly, and (%) of respondents who achieved adequate diabetes knowledge. This
on-going diabetes education is provided based on their knowledge, was done for the overall survey as well as for each of the four sub-
needs, and deficiencies in diabetes self-care. These review sessions scales. We collected demographic, socioeconomic factors: age, gender,
usually focus on the management of hypo- and hyperglycemia, race, type of medical insurance (public vs. private), primary language
carbohydrate counting, blood glucose pattern recognition and insulin spoken in the household, and marital status of the parents/caregivers.
dose adjustments, blood sugar control around sports activities, and Clinical data included: time since diagnosis (categorized as ≤ 1 year,
transitioning to use of insulin pump therapy or continuous glucose 2-5 years or 6+ years), type of insulin therapy (multiple daily injections
monitoring. vs. pump insulin therapy), A1C at visit (dichotomized ≤ 9% and >9%
(75 mmol/mol), number of clinic visit in the last year, any occurrence
of a diabetes related hospitalizations or emergency department visits in
Data collection
the last year or any admissions for diabetes ketoacidosis since
To determine patients’ diabetes knowledge, we developed a diagnosis.
questionnaire assessing four different areas: pathophysiology, diabetes
We have chosen an A1C over 9% (75 mmol/mol) as a cutoff for poor
self-care, hypoglycemia and nutrition/carbohydrate counting. We
diabetes control based on the average A1C in our clinic (~8.8%). This
utilized questions from several previously validated instruments
is in-line with previous studies that reported A1C much higher than
(Figure 1) [10-13].
7.5% (recommended by ADA) [3] in the majority of children with
Demographic, socioeconomic, and clinical data were collected by T1DM, and A1C over 9.5% in ~ 17% of children with T1DM [2]. This
self-report through a survey. Clinical data on A1C was retrieved from higher A1C cutoff was also driven by our overarching study goal to
the electronic medical records: Pediatric Endocrinology Dynamic guide development of a diabetes education program that improves
Record Organizer (PEDRO) (Pedrosoft LLC, Basking Ridge, NJ, USA) clinical outcomes in the most challenging group.
or Computer Information System (CIS) (Cerner).

J Diabetes Clin Prac, an open access journal Volume 1 • Issue 1 • 1000101


Citation: Moskovitz A, Alex Knee MS, Frydman E, Allen H and Tonyushkina K (2018) Diabetes Knowledge in Youth with T1DM and their
Caregivers-A Cross-Sectional Study. J Diabetes Clin Prac 1: 101.

Page 3 of 7

Data analysis a guide to evaluate meaningful clinical differences. Analysis was


conducted using Stata v14.0 (StataCorp, LP College Station, TX). This
The secondary exploratory analysis evaluated predictors of diabetes study was approved and overseen by Baystate Medical Center’s
knowledge among adolescents or caregivers. In general, continuous institutional review board.
variables are represented as means and standard deviations (SD) while
categorical variables are represented as frequencies and percentages.
The overall and sub-scale percentage correct scores are reported along Results
with 95% confidence intervals (CI). The prevalence of adequate
diabetes knowledge was calculated using logistic regression. Results are Characteristics of the study group
presented graphically along with 95% confidence intervals. Exploratory
A total of 215 subjects completed the 22-item diabetes knowledge
hypothesis testing was conducted assessing the within group (e.g
questionnaire as well as demographic and clinical surveys (Table 1).
within-adolescent and within-caregiver) differences between
Over half of them were adolescent respondents.
demographics, socio-economic and clinical factors. Statistical
significance was set at an alpha of 0.05; however, this was used only as

Adolescent Respondents Caregiver Respondents

Diabetes knowledge questionnaire n=124 (57.7%) n=91 (42.3%)

Demographics

Age: mean (sd) 17.1 (2.0) 10.5 (2.5)

Caucasian race: n (%) 90 (72.6) 74 (81.3)

Male gender: n (%) 71 (57.3) 43 (47.3)

English as primary language: n (%) 110 (88.7) 85 (93.4)

Public insurance: n (%) 31 (25.0) 23 (25.3)

High school education or less: n (%) 34 (27.4) 20 (22.0)

missing 3 (2.4) 2 (2.2)

Married parents: n (%) 77 (62.1) 69 (75.8)

missing 2 (1.6) 1 (1.1)

Clinical characteristics

Years since diagnosis: mean (sd) 7.7 (4.3) 3.8 (2.8)

A1C: mean (sd) 8.1 (1.6) 8.0 (1.4)

A1C >9: n (%) 27 (21.8) 22 (24.2)

Insulin pump: n (%) 79 (63.7) 70 (76.9)

Visits in past year: n (%) 1 to 3 40 (32.3) 13 (14.3)

4 51 (41.1) 39 (42.9)

5 to 6 33 (26.6) 39 (42.9)

Hospitalized in past year: n (%) 7 (5.7) 7 (7.7)

missing 0 1 (1.1)

DKA admissions since diagnosis: n (%) 16 (12.9) 12 (13.2)

missing 2 (1.6) 3 (3.3)

Diabetes related ED visits in past year: n (%) 7 (5.7) 4 (4.4)

missing 1 (0.8) 1 (1.1)

Table 1: Characteristics of the study group.

J Diabetes Clin Prac, an open access journal Volume 1 • Issue 1 • 1000101


Citation: Moskovitz A, Alex Knee MS, Frydman E, Allen H and Tonyushkina K (2018) Diabetes Knowledge in Youth with T1DM and their
Caregivers-A Cross-Sectional Study. J Diabetes Clin Prac 1: 101.

Page 4 of 7

The majority of subjects were white (73% of adolescents, and 81% of


caregivers), spoke English as their primary language (89% of
adolescents, and 93% of caregivers), had married parents with at least a
college education (73% of adolescents, and 78% of caregivers), and had
private health insurance (75% for both adolescents and caregivers)
(Table 1).
As expected, adolescents had a twice longer mean time since
diagnosis (7.7 years) than children in the younger group (3.8 years).
The mean A1C for adolescents was 8.1% (65 mmol/mol), and 8.0% (64
mmol/mol) for children under 14. About a quarter of patients from
both groups had an A1C above 9% (75 mmol/mol). About two thirds
of adolescents and nearly three quarters of caregivers of younger
Figure 2: Associations between diabetes knowledge scores and
children reported using insulin pumps. Families with small children
recent A1C.
were more likely to adhere to ADA recommendation [3] of quarterly
clinic visits. Only 13% of them reported less than 4 visits in the last
year compared with 40% in the adolescent group.
Diabetes knowledge was generally good, with average scores of 86%
and 84% correct responses among adolescents and caregivers,
respectively. In the hypoglycemia category, adolescents scored an
average of 98%, and caregivers scored an average of 96%. For questions
related to nutrition/carbohydrate counting, both groups answered 83%
of questions correctly. For pathophysiology the averages scores were
86% and 84% for adolescents and caregivers; and for self-care related
questions the average scores were 87% and 84% for adolescents and
caregivers. For the purpose of our analysis, a score of 80% or higher on
our diabetes knowledge questionnaire (overall and for each specific Figure 3: Associations between diabetes knowledge and
knowledge category) was considered an acceptable level of knowledge. socioeconomic factors.
Scores are reported in (Figures 1-3) as the percent (%) of respondents
who achieved adequate diabetes knowledge. No significant differences
in diabetes knowledge were observed based on gender or patient age.
Diabetes knowledge and socioeconomic factors
Diabetes knowledge and glycemic control Lower levels of parent education, and public health insurance were
Overall, better glycemic control, defined as A1C below 9% (75 associated with lower probability of adequate diabetes knowledge. The
mmol/mol), was associated with higher total percent of adequate rate of adequate knowledge was 29% lower in adolescents (whose
knowledge on our questionnaire (Figure 2). Adolescents with an A1C caregivers had a high-school education or less) and 17% lower in
below 9% (75 mmol/mol) had adequate diabetes knowledge that was19 caregivers with a high-school education or less, compared to those
percentage points higher than those with an A1C above 9% (75 mmol/ with at least a college education (p=0.001 and p=0.141, respectively)
mol) (p=0.030). Parents’ whose children had an A1C below 9% (75 (Figure 3). Publicly insured adolescents and caregivers had a 44% and
mmol/mol) had adequate diabetes knowledge that was 28 percentage 20% lower rate of adequate scores respectively compared those who
points higher on the diabetes knowledge questionnaire (p=0.017). were privately insured (p<0.001 and p=0.072, respectively) (Figure 3).

A similar trend was observed among caregivers, but not adolescents, Additionally, for both adolescent and caregiver respondents, strong
with regards to the nutrition/carb counting questions, where only differences in DK were observed between white and non-white
higher probability of adequate nutrition for parents (caregivers) were subjects (p<0.001 for both groups). Patients’ race was associated with a
associated with lower A1C. For questions related to pathophysiology, 35% difference in overall adequate diabetes knowledge score for
higher probability of adequate knowledge for both parents and adolescent group, and a 44% difference in adequate diabetes
adolescents were associated with lower A1C. No significant differences knowledge score for caregivers (Non-whites had lower scores).
were observed for the hypoglycemia and self-care subscales with
respect to patients’ most recent A1C. Diabetes knowledge and duration since diagnosis
Children in both groups had low rates of hospitalization and Overall adequate diabetes knowledge was not significantly
diabetes related ED visits for acute complications of diabetes: hypo/ associated with the time since diagnosis in either adolescents or
hyperglycemia within the past year and ketoacidosis (DKA) since caregivers. Only self-care probability of adequate knowledge in the
diagnosis (Table 1). Only 13% of all subjects were ever admitted for a adolescent group was higher with the longer duration since diagnosis
DKA (including admission on T1DM diagnosis). Due to the rarity of (p=0.004) (Figure 4). Although we did not find any other significant
these events, associations and confidence intervals were very unstable, associations, we observed several suggestive trends. Among caregivers,
making it difficult to draw any conclusions, and therefore these values self-care probability of adequate knowledge rose with greater time
are not reported. since diagnosis (similar to adolescents) (p=0.21). While adolescent
probability of adequate nutrition knowledge showed a tendency to
decline in relation to the duration since diagnosis (p=0.24), caregivers’

J Diabetes Clin Prac, an open access journal Volume 1 • Issue 1 • 1000101


Citation: Moskovitz A, Alex Knee MS, Frydman E, Allen H and Tonyushkina K (2018) Diabetes Knowledge in Youth with T1DM and their
Caregivers-A Cross-Sectional Study. J Diabetes Clin Prac 1: 101.

Page 5 of 7

probability of adequate knowledge rose the longer their child had been pathophysiology, and self-care, were all similar for both adolescents
diagnosed (p=0.33). Pathophysiology probability of adequate and caregivers.
knowledge trended up for adolescents the longer they had been
A strong association was observed between adequate knowledge of
diagnosed (p=0.26) and although no clear trend was observed,
the pathophysiology of type 1 diabetes and recent A1C values for both
caregivers adequate pathophysiology knowledge worsened over time.
adolescent patients and caregivers. It is logical that patients who are
able to understand the physiological basis for T1DM are also more
likely to better treat themselves and achieve better glycemic control.
On the other hand this may seem odd given indirectness of the link
between the knowledge of pathophysiology of type 1 diabetes and A1C
compared to more specific topics, such as, treatment of hypoglycemia,
nutrition, or diabetes self-care. This contradiction may point to a
number of confounding factors, such as, socioeconomics, or education
that impact both ability to understand complex pathophysiological
concepts and diabetes control.
Considering the differences between groups, it was surprising that
we did not find any relationship between patient or caregiver
knowledge of pathophysiology and the duration since diagnosis
(Figure 3). Four out of five questions in the pathophysiology area were
Figure 4: Associations between diabetes knowledge and the devoted to long-term diabetes complications. Adolescents in our study
duration since patients’ T1DM diagnosis. had been diagnosed with T1DM on average twice as long as children
whose caregivers responded to our questionnaire, and therefore were
likely more exposed to education on the consequences of uncontrolled
diabetes.
Discussion
The nutrition and carbohydrate counting section of our
Using a combination of questions compiled and adapted from questionnaire dealt with assessment of the carbohydrate content of
previously validated questionnaires, this study sought to evaluate foods: reading nutritional value labels, and simple math skills. In our
diabetes knowledge in youth with T1DM and their caregivers. In this practice “number concepts” are the hardest in diabetes education, but
study we examined associations between diabetes knowledge and are essential to patients’ ability to manage their diabetes. In light of
patients’ clinical outcomes, demographic and socioeconomic this, it was not surprising to see that adolescents’ knowledge of
characteristics. Our results provide detailed estimates of various nutrition and carbohydrate counting was not associated with A1C in
aspects of diabetes knowledge and skill areas. While it was generally the adolescent group (Figure 2). In our practice, adolescents are much
reassuring that, on average, the patients in our study scored 83% or more likely to “guesstimate” the amount of bolus insulin based on their
better on all sub-categories of our questionnaire, the breakdown of our experience. On the other hand, caregivers’ knowledge of nutrition and
results into specific associations with patients’ recent A1C, and carbohydrate counting was strongly associated with patient A1C
demographic and socioeconomic status can help to inform diabetes (Figure 2). As parents of younger children are usually responsible for
educators as they continue to develop diabetes program curricula to care including carbohydrate counting and insulin administration, it
better serve patients with T1DM. seems logical that their knowledge of this area directly impacts
Our study found a significant relationship between diabetes glycemic control. These results emphasize the importance of educating
knowledge in adolescents and caregivers of younger children, and parents and caregivers about appropriate dietary considerations in any
patients’ most recent A1C. This finding is in agreement with the effort to improve patients’ glycemic control. This is not to say that less
findings of Beck et al. [8], but differs from the findings of Santos et al. attention should be given to educating adolescents about healthy
[7], who saw no such relationship. More specifically, our results show nutrition, but our results suggest that, for adolescents, other factors
that knowledge of pathophysiology in both groups and nutrition/ than knowledge of nutrition may play a stronger role in diabetes
carbohydrate counting in parents if younger children individually control. Alternative and more concrete recommendations on insulin
associated with current glycemic control. The reason our results differ meal coverage might be beneficial. For example, in our practice, when
from those of Santos et al. [7] is most likely because we considered an carbohydrate counting failure is recognized, we occasionally propose
A1C < 9% (75 mmol/mol) as our criterion dividing line, whereas they fixed insulin doses for meals depending on its size (small, medium,
chose A1Cs < 7.5% (58 mmol/mol) as their cutoff. Our sample was also large).
larger resulting in additional power. Our results regarding the associations between adequate diabetes
Though knowledge of hypoglycemia was not significantly associated knowledge and demographic markers such as race, public versus
with patents’ most recent A1C, not surprisingly, both adolescents and private insurance, and parents’ highest level of education are all in
caregivers performed better on hypoglycemia than any of the other accordance with well established relationships between socioeconomic
question categories. On the one hand, hypoglycemia is a scary acute factors and patient health [14]. Lower socioeconomic status, as
complication of diabetes and early appreciation and management of indicated by public health insurance, level of education, and primary
this serious problem could be lifesaving. On the other hand, excessive language was significantly associated across the board with lower
fear of hypoglycemia could lead to decreasing insulin doses and higher adequate diabetes knowledge for adolescents. It was also observed that
glucose levels and A1C. A notable limitation was that this knowledge non-white patients’ demonstrated lower adequate diabetes knowledge
area was covered by only one question. Diabetes knowledge scores in than their white counterparts. Importantly, adolescent patients’
the other three categories that we analyzed, nutrition/carb counting, adequate diabetes knowledge appears to be more severely affected by

J Diabetes Clin Prac, an open access journal Volume 1 • Issue 1 • 1000101


Citation: Moskovitz A, Alex Knee MS, Frydman E, Allen H and Tonyushkina K (2018) Diabetes Knowledge in Youth with T1DM and their
Caregivers-A Cross-Sectional Study. J Diabetes Clin Prac 1: 101.

Page 6 of 7

socioeconomic factors than parents’ and caregivers’. Many other programs in particular addressing pathophysiology, nutrition and
studies have also found that poor glycemic control is associated with carbohydrate counting. The latter skill might have a bigger clinical
lower socioeconomic status [14-16]. Our results suggest that diabetes impact in families with pre-adolescent children. Diabetes education
knowledge may play a role in impacting this disparity. Particular curricula should be individualized with emphasis on individual
attention then should be given to helping teach adolescents from patient’s socioeconomic challenges and knowledge gaps.
disadvantaged backgrounds about proper dietary and self-care
practices; and education programs should be developed with special Acknowledgement
emphasis on using a curriculum that serves these patients.
We would like to thank the diabetes educators of the Baystate
Moreover, our results regarding the relationships between race and Pediatric Diabetes Program: Kathy Dunn, RN, CDE, Lynn Henry, RD,
socioeconomic status and adequate diabetes knowledge serve to CDE, and Lori Nowak RN for providing diabetes education and caring
reemphasize the significance of considering the treatment of chronic for study patients.
health conditions like T1DM not merely as medical problems, but also
as larger social issues. It is important that health care providers realize
the inherent inadequacy of their treatment of patients, and that References
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Finally, our patient population was largely Caucasian with private status in Hispanic and white non-Hispanic youths with type 1 diabetes
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to patient populations with largely different demographic 15. Coulon SJ, Velasco-Gonzalez C, Scribner R, Park CL, Gomez R, et al.
(2016) Racial differences in neighborhood disadvantage, inflammation
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Recommendations 16. Hassan K, Loar R, Anderson BJ, Heptulla RA (2006) The role of
socioeconomic status, depression, quality of life, and glycemic control in
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since diagnosis we recommend strengthening of diabetes review

J Diabetes Clin Prac, an open access journal Volume 1 • Issue 1 • 1000101


Citation: Moskovitz A, Alex Knee MS, Frydman E, Allen H and Tonyushkina K (2018) Diabetes Knowledge in Youth with T1DM and their
Caregivers-A Cross-Sectional Study. J Diabetes Clin Prac 1: 101.

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17. Cox DJ, Kovatchev BP, Gonder-Frederick LA, Summers KH, McCall A, et performance among adults with type 1 and type 2 diabetes. Diabetes Care
al. (2005) Relationships between hyperglycemia and cognitive 28: 71-77.

J Diabetes Clin Prac, an open access journal Volume 1 • Issue 1 • 1000101

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