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LITHUANIAN UNIVERSITY OF HEALTH SCIENCES

DEPARTMENT OF ENDOCRINOLOGY

SALEM KASSEM

FACULTY OF MEDICINE VI

GROUP 32

Factors Related to the Glycemic Control in Lithuanian Adolescents with

Type 1 Diabetes Mellitus

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Table of contents

1. Title page (pg.1)

2. Table of content (pg.2)

3. Summary (pg.3-4)

4. Acknowledgments(pg.5)

5. Conflicts of interest(pg.5)

6. Ethics Committee Clearance(pg.6)

7. Abbreviations(pg.7)

8. Introduction(pg.8)

9. Aims and Objectives (pg.9)

10. Literature Review (pg.10-13)

11. Subjects and Methodology (pg.14-16)

12. Results(pg.17-25)

13. Discussion of Results(pg.26-27)

14. Conclusion(pg.28)

15. Recommendations (pg.29)

16. References (pg.30-38)

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Summary

Background

Type 1 Diabetes Mellitus (T1DM) is one of the most prominent and challenging conditions of the 21st century. It’s characterized by high blood glucose levels due to reduced insulin secretion which affects about 1 in every 400-500 youth worldwide. Various attempts have been directed towards a better understanding of T1DM and in developing better aspects of controlling it and managing a lifetime with it.

Objective

1) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in male and in female adolescent patients with T1DM.

2) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in adolescent patients with T1DM, using multiple daily injections and using insulin pumps.

3) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in groups of adolescent patients with T1DM, having primary caregivers with lower and with higher education levels.

4) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in adolescent patients with T1DM having optimal (HbA1c<7.5%) and having suboptimal (HbA1c>7.5%) glycemic control.

5) to analyze possible relations of age, gender, diabetes-related factors (duration of T1DM, HbA1c level, BMI, insulin delivery method), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially, who is the primary care-giver and education level of the primary care-giver of the adolescent patient) to optimal or suboptimal diabetes glycemic control.

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Subjects and methods

Subjects were chosen based on; age between 13 – 18, having been diagnosed with T1DM for a period of at least one year.

A total of 52 adolescents with T1DM participated in this study. It involved 4 questionnaires that questioned the patients’ emotional states, problem areas in diabetes, affection by surrounding, activeness socially, parental distress. Also the current level of HbA1c was checked.

Results

Females had better disease control when compared to males, but females had higher scores of problem areas in diabetes scale.

Higher HbA1c level was among patients with longer duration of diabetes and adolescents with optimal level of HbA1c were less negatively affected by their surrounding. Parent of adolescents with optimal disease control reported better parent-teen relationship.

Caregivers of adolescents with T1DM that are currently using Continuous Subcutaneous Insulin Infusion had higher score of distress compared to caregivers of adolescents that use Multiple Daily Injections of insulin.

Conclusion:

1) Adolescent female patients with type 1 diabetes mellitus have better glycemic control and higher levels of diabetes distress than male patients.

2) Parents of adolescents using insulin pumps experience higher diabetes distress than parents of adolescents using multiple daily injections.

3) No differences in diabetes-related factors, emotional state, diabetes-related distress (in

adolescent patients and in their primary care-givers) and social factors in groups of adolescent patients with type 1 diabetes, having primary caregivers with lower and with higher education levels, were found.

4) Adolescents with optimal glycemic control have shorter diabetes duration, are less affected by social surroundings and their parents have lower levels of parent-teen relationship distress related to diabetes.

5) Suboptimal diabetes glycaemic control in the analysed sample is significantly associated only with longer diabetes duration, but not with other analysed diabetes-related, psychological, social factors.

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Acknowledgements

A lot of time, and a great deal of effort were given to make this research possible. Thanks to the residents in the pediatrics endocrinology department in Kaunas clinics and to everyone who helped throughout this research and supported it. I would like to give special thanks to Dr. Lina Lašaite for helping and advising me throughout the whole research.

Conflict of interests

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Abbreviations list

T1DM - type 1 diabetes mellitus, T2DM- type 2 diabetes mellitus POMS - profile of mood state,

DDS-P - parents diabetes distress scale, PAID – Problem Areas in Diabetes BMI - body mass index,

SD - standard deviation, HbA1c – glycated haemoglobin

CSII- continuous subcutaneous insulin infusion MDI- multiple daily injections

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Introduction

Type 1 Diabetes Mellitus (T1DM) is a lifelong metabolic disorder characterized by high blood glucose levels due to reduced insulin secretion [1]. About 1 in 400-500 youth have T1DM [2,3]. In fact, T1DM is now the third most common chronic disease in children and adolescents (after asthma and cerebral palsy) [4], making it a huge public health problem in this population.

The management of T1DM involves blood glucose monitoring and the coordination of those results with insulin administration, dietary intake, and physical activity [5]. The adolescent and his or her family are responsible for the majority of treatment management [6].

A good glycemic control of the disease is crucial in preventing the complications of diabetes. Glycated hemoglobin (HbA1c) level is used as a measurement for the glycemic control of diabetes. The target HbA1c level for children and adolescents age-groups is recommended to be less than 7.5%. HbA1c level less than 7.5% was shown to lower the risk for long-term complication, as the HbA1c level increases, also the risk for long-term complications increases. Diabetes long-term complications are divided into microvascular and macro-vascular. Microvascular complications are retinopathy, neuropathy and nephropathy which is preceded by microalbuminuria. Macro-vascular complications are coronary artery disease, cerebrovascular disease and peripheral vascular disease [7].

Many factors can have a negative effect on the health of diabetic patient: depression, high stress levels, low self-esteem, anxiety, low levels of social support from the family members and friends, diabetes-related distress, eating disorders, etc. All of these can lower quality of life, worsen the regimen adherence, negatively affect glycemic control of the disease and thus increase the risk for developing complications.

Adolescents with T1DM have been found to be less adherent to treatment and particularly at risk of poor glycemic control [8]. Indeed, adolescents with T1DM, as a group, display the worst glycemic control compared to other age groups [9,10], which puts them at increased risk for developing complications [11,12].

To date, diabetes-related, emotional and social factors related to diabetes glycemic control are mainly examined in adult patients and usually in those with type 2 diabetes. Complex analysis of bio-psycho-social factors in relation to diabetes glycemic control, especially in adolescents, as an age-group marked by significant biological, psychological, social changes and facing multiple challenges and transitions, are rather scarce.

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Aim and objectives

The aim of the study was to examine diabetes-related, emotional and social factors related to diabetes glycemic control in adolescents with type 1 diabetes mellitus.

Objectives

6) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in male and in female adolescent patients with T1DM.

7) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in adolescent patients with T1DM, using multiple daily injections and using insulin pumps.

8) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in groups of adolescent patients with T1DM, having primary caregivers with lower and with higher education levels.

9) to assess differences of diabetes-related factors (duration of T1DM, HbA1c level, BMI), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially) in adolescent patients with T1DM having optimal (HbA1c<7.5%) and having suboptimal (HbA1c>7.5%) glycemic control.

10) to analyze possible relations of age, gender, diabetes-related factors (duration of T1DM, HbA1c level, BMI, insulin delivery method), emotional state, diabetes-related distress (in adolescent patients and in their primary care-givers) and social factors (affection by surroundings, activeness socially, who is the primary care-giver and education level of the primary care-giver of the adolescent patient) to optimal or suboptimal diabetes glycemic control.

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Literature review

Type 1 diabetes mellitus in adolescents

Age and gender are important factors that moderate the impact of chronic physical illness on patient's adjustment and psychological well-being. In childhood, boys with chronic physical illnesses are more likely than girls to display behavioral and adjustment problems [13].

Adolescence is the stage in which lifelong health-related behaviors are established in children with chronic disease like T1DM [14]. Adolescent girls with T1D are more distressed by their diabetes, experiencing lower self-esteem, more depressive symptoms [15].

Adolescence is a difficult time for patients with T1D. Glycemic control and treatment adherence at the period of adolescence often deteriorate [16], and the risk of developing long-term complications seems to accelerate [17].

Adolescents face multiple challenges and transitions, including puberty, changes in school, investment in peer and romantic relationships, and shifts in relationships with family [18]. Each of these

transitions and challenges has the potential to become sources of stress and to increase over the course of the adolescence [19].

In adolescents with T1DM, both cross-sectional and longitudinal studies have found a

relationship of exposure to stressful life events with diminished glycemic control [20,21]. Increase in stressful life events is associated with increase in depression, anxiety, low self-esteem, and behavioral problems [19,23], and the presence of depressive symptoms or depression is an amplifier for diabetes-related distress [24].

Psychological adjustment and psychiatric disorders

Children with T1DM have a higher risk for adjustment and coping problems during the initial period after the diagnosis with type 1 diabetes [25].

Females are more likely to be diagnosed with various psychiatric conditions, especially during the adolescence years. They were more distressed by their diabetes, had lower self-esteem, and reported more depressive and eating disorder symptoms. The psychiatric diagnosis was linked to poor glycemic control [25-28].

The higher levels of depression in females with type 1 diabetes seem to continue into adulthood [29]. Emotional problems, anxiety disorders, lower self-esteem are also higher among adult women [26,31]. These psychological disorders lower the quality of life [32] and worsen the glycemic control [33,34], which in turn increase the risk for diabetes- related complications [35].

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Depressive mood [36-40] and anxiety [38,39] are more prevalent in children with T1DM compared to healthy children. Depression was found to be most common psychological disorder among children and adolescents with T1DM [41]. It is associated with worsening glycemic control, higher HbA1c levels, lower quality of life, increased frequency of hospitalization [25,42-46], and more disease complications [47]. On the other hand, other studies could not find a correlation between the level of psychiatric problems and the metabolic control [36,48-52].

The prevalence of eating disorders among adolescent girls with T1DM is twice higher than non-diabetic girls, which is associated with poor glycemic control [25]

Poor glycemic control is also associated with other psychosocial problems, like poor self-esteem and social anxiety [25].

Diabetes distress

Diabetes distress is a general term which is referred to emotional burdens, stressors and frustrations that stem from managing diabetes [53,54].

Depression and diabetes distress are both prevalent in individuals with T1DM [55].

Diabetes-specific distress is a common condition in adolescents with T1DM, it includes high levels of negative affect and was linked to poorer disease management [56].

New studies begun to suggest that a much larger number of patients with diabetes experience sub-clinical diabetes-related distress than a diagnosed psychological disorder, and that this type of distress can impact the glycemic control more than the clinical disorders [57,58].

Depressive disorder was found to be related to, but distinct from diabetes distress, and that many patients with high levels of depressive affect are having diabetes distress, not depression [59]. Some studies showed that adolescents girls with T1DM are more distressed by their disease, experience lower self-esteem and more depressive symptoms [15,61].

In adult patients, a comparison of both genders found females to have a higher negative emotional consequences aspects of diabetes distress [62].

Family functioning

Parental distress, and depression can negatively affect the psychological and health- related outcomes in their diabetic children [63,64], and increase the diabetes-specific family conflicts [65]. They are less likely to provide adequate support, which can worsen the child’s glycemic control [65-68].

Children of depressed parents tend to become depressed as they emerge into adulthood, which is likely because of the negative environment that is present when the parents are depressed [69].

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Maternal depression was associated with higher risk for depressive disorder among their adolescents with T1DM. It is estimated that one third of mothers of youth with T1DM has suffered from

depression at some point after the diagnosis of their child [38,70].

Increased psychological distress of both the parents and their T1DM adolescent is associated with the occurrence of more diabetes-specific family conflicts [65]. Also the diabetes-specific family conflicts were found to be associated with the elevated levels of HbA1c [65].

Families in which the parents had higher education, the children had better glycemic control with lower HbA1c levels [22,30].

Few studies could not find a correlation between the caregiver anxiety and the glycemic control of their adolescent [60,71], it was suggested that this is because adolescents become more independent and take more responsibility for their disease management [66,72].

Family based interventions improved family cohesion and communication skills. Improved regimen behavior with better glycemic control was among diabetic adolescents of those families [73-75]. Social support

Social support from families and peers of diabetic children is crucial. Families which provided higher levels of support for diabetes care was expressed in better adherence and glycemic control [25] Diabetic adolescents that suffered from negative peer reactions to their disease self-care, had adherence difficulties and increased diabetes stress, which worsened their glycemic control [25].

Social anxiety

Social anxiety involves a fear and avoidance of social situations as well as self-critical evaluations while in the presence of others [76-79]. Not surprisingly, social anxiety is prevalent during

adolescence, a period marked by social pressures and the desire to belong to a social group [80]. Social anxiety was documented in adolescents with health conditions, including those diagnosed with

epilepsy, attention deficit hyperactivity disorder, anorexia nervosa, bulimia nervosa, and endocrine disorders [81-85]. On the other hand, social anxiety was also documented among healthy children and adolescents [76,86-88].

The potential for social anxiety to influence adherence in adolescents with T1DM is high, the adolescents wants to belong to a social group and are subject to social pressure, but they need to engage in observably different behaviors to adhere to their self-care regimen which includes diet limitations, glucose testing, and insulin injections [80,89,90].

Some researchers found that social anxiety levels were the same among both sexes of adolescents [90]. Some researchers found that social anxiety worsen adherence to therapy in boys but not in girls [90], and that social anxiety was negatively correlated with dietary and insulin adherence in boys [90].

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Also more behavioral and adjustment problems were reported among boys with chronic illnesses [13].Other researchers failed to find a gender to be more susceptible to social anxiety [91]. Also the social anxiety among both genders was linked to worse quality of life

The quality of life and adherence to the therapy among adolescents with type 1 diabetes was affected by social anxiety [90].

To date, no known studies has examined the levels of social anxiety in Lithuanian adolescents with T1DM and how it affects the management of their disease.

Quality of life

Adolescents with T1DM had lower quality of life compared to the healthy adolescents[25]. Diabetic girls had worse quality of life when compared to diabetic boys [25].

Lower quality of life appears to be more prevalent in diabetic adolescents with depression and lower socioeconomic status [25]

Better quality of life is among adolescents with better metabolic control [25]

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Subjects and methods

Subjects

The study was approved by the Ethics Committee of the hospital of Lithuanian University of Health Sciences, Kaunas, Lithuania (No. BEC-MF-822), and written informed consent was obtained from all study participants and their parents or official caregivers.

Participants were recruited of patients who were hospitalized in the Department of Paediatric

Endocrinology in the hospital of Lithuanian University of Health Sciences. A total of 52 adolescents (age 13-18 years) diagnosed with T1DM for at least one year and their primary caregivers participated in the study. The time-frame of the study was from July 2015 till December 2016.

Participating adolescents were asked to complete three questionnaires, and one questionnaire was filled by their primary caregivers. The primary caregivers were asked also about their education (school degree or higher education).

The data on age, gender, duration of diabetes, insulin delivery methods (insulin pumps or multiple daily injections), HbA1c levels, BMI were collected from the files of the patients.

The questionnaires and data forms were coded numerically to preserve patient confidentiality.

Psychological assessment

Problem Areas in Diabetes (PAID) scale [92] was used for evaluation of diabetes distress of the participants. The PAID comprises 20 items assessing diabetes-related problems. Respondents rate the severity of each problem on a five-point Likert scale (0 - “not a problem” to 4 -”serious problem”). Summing all items scores and multiplying by 1.25 results in an overall PAID score, which ranges from 0 to 100. Higher scores indicate more severe distress.

The Profile of Mood States (POMS) [93] was used for the evaluation of emotional state of the participants. The POMS questionnaire is a self-reported psychological measurement of immediate mood states of individuals. It estimates the intensity of mood state, is easy to administer and is one of the most widely used and accepted mood scales in healthy populations [94], also in various research fields including experimental psychology, physiology and psychiatry [95].

The POMS is an 65-item mood adjective checklist in which, using a five-point Likert-type scale, each adjective is scored from 0 (absent) to 4 (very much) based on how well each item describes the respondent’s mood during the certain time frame. Our data were based on “during the past week, including today” time frame. Following standard scoring methods, six mood scales are derived: tension-anxiety, depression-dejection, anger-hostility, vigour- activity, fatigue-inertia and confusion-bewilderment. The higher score denotes a higher level of certain emotions.

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The Diabetes Distress Scale for Parents of teens with Type 1 Diabetes Mellitus (Parent-DDS) [96]. The Parent-DDS is a 20-item self-report scale, which highlights four critical dimensions of parent-related distress: personal distress, teen management distress, parent\teen relationship distress and healthcare team distress.

This scale uses a five-point Likert type scale, each item is scored from 0 (not at all) to 4 (a great deal). Mean item score of 0-1.9 is considered “little or no distress”, a mean item score between 2.0-2.9 is considered as “moderate distress”, and a mean item score >3.0 is considered as “high distress”. The Social Scale was designed by ourselves in order to evaluate the affection of the social

surrounding on the T1DM patient and his/her social activeness . It consists of two six-point Likert-type subscales (0 - “never” to 6 - “all the time”) on affection by social surroundings (14 items) and

activeness socially (13 items) and also three questions about participation in a sport activity and about his/her classmates and teachers being informed about his/her diabetes (with possible “yes” or “no” questions). A higher score in both subscales indicate a lower social activeness and a more negative affection by social surrounding.. This scale was checked, analyzed and adapted with a group of 10 adolescent T1DM patients before using it in this study.

Statistical Analyses

Analyses were performed using SPSS 22.0 software. The limit of significance was defined as a two-sided p-value lower than 0.05.

According to Kolmogorov-Smirnov and Shapiro-Wilk tests (Table 1), most of the analysed variables are not normally distributed, so the differences between means in the groups were calculated using nonparametric Mann-Whitney test. The values are given as median and quartiles (25-75 percentiles).

Table 1. Distribution of the analyzed variables using Kolmogorov-Smirnov and Shapiro-Wilk tests Kolmogorov-Smirnov criterion (p value) Shapiro-Wilk criterion (p value) POMS, tension-anxiety, 0.180 (<0.001) 0.858 (<0.001) POMS, depression-dejection 0.168 (0.001) 0.794 (<0.001) POMS, anger-hostility 0.190 (<0.001) 0.887 (<0.001) POMS, vigor-activity 0.101 (0.200)* 0.977 (0.395)* POMS, fatigue-inertia 0.200 (<0.001) 0.845 (<0.001) POMS, confusion-bewilderment 0.177 (<0.001) 0.906 (0.001)

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Affection by surroundings 0.159 (0.002) 0.857 (<0.001)

Activeness socially 0.115 (0.083)* 0.950 (0.029)

PAID overall score 0.190 (<0.001) 0.858 (<0.001)

DDS-P overall score 0.072 (0.200)* 0.982 (0.596)*

DDS-P Personal distress 0.089 (0.200)* 0.961 (0.090)* DDS-P Teen management distress 0.179 (0.001) 0.966 (0.140)* DDS-P Parent-Teen Relationship

distress

0.115 (0.082)* 0.945 (0.019)

DDS-P Healthcare Team distress 0.367 (<0.001) 0.568 (<0.001)

* normally distributed

Multiple logistic regression test was used to examine the relationship between the binary dependent variable ( optimal or suboptimal diabetes glycaemic control) and the independent variables

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Results

The sociodemographic and diabetes-related information

Of 60 adolescent T1DM patients invited to participate in the research, 52 (86.6%) patients and their primary care-givers agreed and filled all the necessary information and questionnaires. Of all participating patients 19 were males (36.5 %) and 33 females (63.5%). The age of participating adolescent T1DM patients was 13-18 years, mean age 15.6±1.5 years.

Table 2 reports descriptive information about the participants, their sex, age, duration of diabetes, current level of HbA1c, insulin delivery method, primary caregiver, level of education of the

caregiver, members of a sport club, teachers know about their diabetes, and if their classmates know about diabetes.

Table 2. Descriptive information on the study participants (adolescents with type 1 diabetes and their primary caregivers)

Adolescents with T1D, n (%) Males 19 (36.5)

Females 33 (63.5)

Total 52 (100)

Insulin delivery method, n (%) Multiple daily injections (MDI) 28 (53.8)

Insulin pump 24 (46.2)

Primary caregivers, n (%) Father 5 (9.6)

Mother 41 (78.8)

Both 6 (11.5)

Education of primary caregivers, n (%) College degree 31 (59.6) Lower than college degree 21 (40.4) Member of sport club / sport activity, n (%) No 31 (59.6)

Yes 21 (40.4)

Teachers know about diabetes, n (%) No 7 (13.5)

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Classmates know about diabetes, n (%) No 3 (5.8)

Yes 49 (94.2)

Mean ± SD Min - Max Median 25th – 75th

percentile

Age, years 15.6 ± 1.5 13 - 17 16.0 14.0 – 17.0

Duration of T1D, years 7.0 ± 3.5 1 - 15 7.0 4.25 – 10.0

HbA1c level, % 8.3 ± 1.2 6.1 – 10.5 8.0 7.25 – 9.4

The differences between the gender groups

Comparing diabetes-related, psychological and social data between both genders, we found that female adolescent patients had significantly lower level of HbA1c than males, showing better diabetes glycemic control. But female adolescents also had significantly higher score of the Problem Areas in Diabetes questionnaire than males, indicating that they have higher diabetes distress levels than males even though they are having a lower level of HbA1c. No more significant differences between the gender groups were detected (Table 3).

Table 3. Comparison of age, diabetes duration, HbA1c level, BMI and psychosocial factors (emotional state, social affection, diabetes distress in patients and in their caregivers) between gender groups:

Categories Males (n=19) Females (n=33) p-value

Median 25th – 75th percentile Median 25th – 75th percentile Duration of T1D, years 8.0 5.0 – 9.0 7.0 4.0 – 10.0 0.567 HbA1c level, % 8.3 7.9 – 10.0 7.8 7.0 – 9.2 0.022 BMI, kg/m² 22.3 20.1 – 23.1 20.2 18.29 – 23.2 0.291 POMS, tension-anxiety, 2.0 1.0 – 8.0 5.0 1.0 – 9.5 0.212 POMS, depression-dejection 5.0 1.0 – 12.0 8.0 3.0 – 11.5 0.185

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POMS, anger-hostility 6.0 1.0 – 13.0 6.0 3.5 – 14.0 0.295 POMS, vigor-activity 17.0 14.0 – 20.0 16.0 13.0 – 20.5 0.402 POMS, fatigue-inertia 5.0 2.0 – 7.0 5.0 4.0 – 9.0 0.364 POMS, confusion-bewilderment 1.0 -1.0 – 2.0 2.0 0 – 5.0 0.094 Social Scale, Affection by surroundings 7.0 4.0 – 9.0 6.0 4.0 – 8.0 0.190 Social Scale, Activeness socially 30.0 26.0 – 37.0 32.0 20.0 – 37.5 0.827

PAID overall score 10.0 7.0 – 13.0 14.0 8.0 – 23.0 0.049 DDS-P overall score 1.25 0.8 – 1.6 1.35 0.9 – 1.98 0.543 DDS-P Personal distress 1.16 0.66 – 1.5 1.16 0.66 – 2.0 0.627 DDS-P Teen management distress 2.25 1.5 – 2.25 2.25 1.6 – 2.6 0.382 DDS-P Parent-Teen Relationship distress 1.12 0.75 – 1.62 1.25 0.6 – 2.4 0.536 DDS-P Healthcare Team distress 0 0 – 0.5 0 0 – 0.5 0.655

Comparison between the insulin delivery method groups (multiple daily injections versus insulin pump)

Our results showed that parents of adolescents with T1DM who are using insulin pumps have

significantly higher levels of The Diabetes Distress Scale for Parents overall score, indicating that they experience higher levels of diabetes distress than those parents whose adolescents are using multiple daily injections. No more significant differences between the groups of insulin delivery methods were found (Table 4).

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Table 4. Comparison of age, diabetes duration, HbA1c level, BMI and psychosocial factors (emotional state, social affection, diabetes distress in patients and in their caregivers) between insulin delivery method groups

Categories Multiple daily injections (n=28)

Insulin pumps (n=24) p-value

Median 25th – 75th percentile Median 25th – 75th percentile Duration of T1D, years 7.0 4.0 – 10.0 6.0 5.0 – 9.75 0.495 HbA1c level, % 8.1 7.5 – 9.4 8.0 7.2 – 9.5 0.791 BMI, kg/m² 21.2 18.9 – 23.0 21.8 20.0 – 23.7 0.196 POMS, tension-anxiety, 3.5 1.0 – 6.0 5.0 1.0 – 12.75 0.362 POMS, depression-dejection 5.5 2.25 – 11.0 7.5 1.5 – 14.75 0.550 POMS, anger-hostility 6.0 2.25 – 12.5 5.5 3.0 – 16.0 0.613 POMS, vigor-activity 16.0 13.25 – 18.75 16.0 13.25 – 22.0 0.392 POMS, fatigue-inertia 6.0 5.0 – 7.75 4.5 2.0 – 11.75 0.328 POMS, confusion-bewilderment 1.0 0 – 2.75 1.5 0 – 5.0 0.426 Social Scale, Affection by surroundings 5.5 4.0 – 9.0 6.5 4.25 – 8.0 0.644 Social Scale, Activeness socially 33.5 21.75 – 39.75 28.5 21.75 – 36.75 0.104

PAID overall score 12.0 8.0 – 21.0 11.0 7.25 – 20.75 0.934

DDS-P overall score 1.2 0.8 – 1.5 1.5 0.9 – 2.1 0.043 DDS-P Personal distress 1.16 0.66 – 1.5 1.6 0.66 – 2.1 0.254 DDS-P Teen management distress 2.25 1.5 – 2.25 2.25 1.38 – 2.69 0.493 DDS-P Parent-Teen Relationship distress 1.19 0.75 – 1.6 1.37 0.4 – 2.5 0.525

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DDS-P Healthcare Team distress

0 0 – 0.5 0 0 – 0.5 0.459

Comparison between the levels of HbA1c groups (optimal level of HbA1c<7.5% versus suboptimal level of HbA1c>7.5%)

Adolescent patients in the group of suboptimal level of HbA1c were found to have significantly longer T1DM duration than those with optimal. Adolescent with an optimal disease control had lower level of Affection by Surroundings subscale of The Social Scale, showing that adolescents with optimal

disease control perceive a lower affection by their social surrounding than adolescents with suboptimal disease control.

Also significantly lower level of parent-teen relationship distress in Diabetes Distress Scale for Parents was found in patients with optimal level of HbA1c than in those with suboptimal, which can mean less conflicts between the parent and the teen about the management of diabetes.

Comparison of other diabetes-related, emotional and social factors between the groups of optimal and suboptimal diabetes control are shown in table 5.

Table 5. Comparison of age, diabetes duration, HbA1c level, BMI and psychosocial factors (emotional state, social affection, diabetes distress in patients and in their caregivers) between HbA1c level (below and above 7.5 %) groups

Categories HbA1c<7.5% (n=16) HbA1c>7.5% (n=36) p-value Median 25th – 75th percentile Median 25th – 75th percentile Duration of T1D, years 5.0 2.25 – 6.75 8.5 5.0 – 10.0 0.002 BMI, kg/m² 21.3 19.2 – 22.9 21.6 19.1 – 23.3 0.751 POMS, tension-anxiety, 5.0 0.25 – 9.75 4.0 1.0 – 8.0 0.937 POMS, depression-dejection 6.5 3.25 – 11.0 5.5 1.25 – 12.0 0.750 POMS, anger-hostility 5.0 3.0 – 15.0 6.0 2.25 – 13.0 0.960 POMS, vigor-activity 16.0 13.25 – 20.75 16.0 13.25 – 20.0 0.921 POMS, fatigue-inertia 5.0 2.2– 9.5 5.0 4.0 – 8.0 0.604 POMS, confusion- 1.5 -0.75 – 5.75 1.0 0 – 3.0 0.436

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bewilderment Social Scale, Affection by surroundings 5.0 3.25 – 6.5 7.0 5.0 – 9.0 0.024 Social Scale, Activeness socially 32.5 24.5 – 38.75 30.0 21.0 – 37.0 0.613

PAID overall score 9.5 5.5 – 18.5 13.0 8.25 – 21.0 0.131 DDS-P overall score 1.08 0.66 – 1.48 1.4 0.9 – 1.9 0.119 DDS-P Personal distress 0.99 0.33 – 1.66 1.25 0.7 – 1.96 0.438 DDS-P Teen management distress 2.25 1.56 – 2.5 2.25 1.5 – 2.5 0.912 DDS-P Parent-Teen Relationship distress 0.87 0.28 – 1.34 1.5 0.75 – 2.5 0.028 DDS-P Healthcare Team distress 0 0 – 0.88 0 0 – 0.5 0.459

Caregivers education level groups

We also compared diabetes-related, psychological and social factors between the groups of different education levels of the caregiver (only secondary school education versus a higher education) but no significant differences between those groups were found. Table 6 shows the comparison between education levels.

Table 6. Comparison of age, diabetes duration, HbA1c level, BMI and psychosocial factors (emotional state, social affection, diabetes distress in patients and in their caregivers) between primary caregivers’ education groups

Categories College degree (n=31) Lower than college degree (n=21) p-value Median 25th – 75th percentile Median 25th – 75th percentile Duration of T1D, years 6.0 3.0 – 9.0 9.0 5.5 – 10.0 0.083

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HbA1c level, % 8.0 7.4 – 9.4 8.0 7.0 – 9.5 0.940 BMI, kg/m² 21.0 18.9 – 23.0 22.3 19.25 – 24.3 0.225 POMS, tension-anxiety, 5.0 1.0 – 9.0 4.0 2.0 – 8.5 0.918 POMS, depression-dejection 7.0 1.0 – 13.0 5.0 2.5 – 13.0 0.588 POMS, anger-hostility 6.0 2.0 – 16.0 6.0 3.5 – 13.0 0.614 POMS, vigor-activity 15.0 12.0 – 20.0 16.0 15.0 – 20.5 0.290 POMS, fatigue-inertia 7.0 4.0 – 8.0 5.0 2.5 – 7.5 0.215 POMS, confusion-bewilderment 1.0 0 – 4.0 1.0 -0.5 – 4.0 0.707 Affection by surroundings 6.0 4.0 – 10.0 6.0 4.0 – 8.0 0.436 Activeness socially 33.0 21.0 – 37.0 30.0 22.5 – 38.0 0.918 PAID overall score 12.0 7.0 – 21.0 12.0 9.0 – 20.5 0.595 DDS-P overall score 1.35 0.8 – 1.8 1.2 0.88 – 1.7 0.823 DDS-P Personal distress 1.16 0.66 – 1.66 1.16 0.66 – 2.2 0.477 DDS-P Teen management distress 2.25 1.5 – 2.5 2.25 1.63 – 2.75 0.239 DDS-P Parent-Teen Relationship distress 1.12 0.75 – 2.37 1.25 0.63 – 1.87 0.695 DDS-P Healthcare Team distress 0 0 – 0.5 0 0 – 0.5 0.369

Possible relations between optimal or suboptimal glycemic control and diabetes-related, psychological and social factors

Binomial logistic regression was performed (Table 7) to analyze possible relations between optimal or suboptimal diabetes glycaemic control and psychological, social and diabetes-related factors. The cross-sectional design of the study does not allow for cause-effect inferences between diabetes control and diabetes-related factors.

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It showed that suboptimal diabetes glycaemic control (HbA1c > 7.5 %) in our sample is significantly associated only with longer diabetes duration, but not with other analysed factors related to emotional state, social relations, diabetes distress, age, gender, diabetes delivery method, primary caregivers of the patients and education of the primary care givers.

Possibly, in a bigger sample may be more relations could be found, as the analysed sample size was rather small (logistic regression is very dependent on the sample size), besides there are other potential confounders that were not controlled for, including diabetes knowledge, self-management practices, medication adherence.

Table 7. Results of binomial logistic regression analysis of diabetes glycaemic control (optimal: HbA1c<7.5% vs. suboptimal: HbA1c>7.5%) in relation to factors associated with glycaemic control among adolescent patients with type 1 diabetes.

Independent value Standardised regression coefficient

Odds ratio 95% confidence interval (CI)

p-value

Age 0.599 1.82 0.71 – 4.70 0.215

Gender 1.746 5.73 0.32 – 10.27 0.236

Duration of diabetes 0.591 1.80 1.07 – 3.06 0.028

Insulin delivery method (multiple daily injections; insulin pump)

1.550 4.71 0.13 – 17.26 0.399

Primary care giver (mother; father; both) -1.047 0.519 0.35 1.68 0.001 – 13.86 0.03 – 9.28 0.732 0.800

Education of primary care giver (lower than college; college degree) 1.739 5.69 0.14 – 2.32 0.358 BMI 0.118 1.12 0.73 – 1.72 0.588 POMS tension-anxiety -0.156 0.86 0.41 – 1.80 0.681 POMS depression-dejection 0.044 1.045 0.87 – 1.26 0.640 POMS anger-hostility 0.076 1.08 0.75 – 1.54 0.678

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POMS vigour-activity -0.121 0.89 0.64 – 1.22 0.458 POMS fatigue-inertia -0.262 0.77 0.46 – 1.28 0.310 POMS confusion-bewilderment -0.369 0.69 0.29 – 1.60 0.389 Social Scale, Affection by surroundings 0.224 1.25 0.84 – 1.86 0.270 Social Scale, Activeness socially 0.022 1.02 0.84 – 1.24 0.819 Sport activity 2.772 15.99 0.27 – 11.81 0.207

Classmates know about diabetes 1.770 4.88 0.00 -0.01 0.999

Teachers know about diabetes -1.638 0.01 0.00 -0.01 0.999

PAID overall score 0.090 1.09 0.88 – 1.37 0.426

DDS-P overall score -4.052 0.017 0.001 – 1.78 0.702 DDS-P Personal distress 0.885 2.423 0.004 – 1.423 0.786 DDS-P Teen management distress 0.602 1.826 0.025 – 13.3 0.783 DDS-P Parent-Teen Relationship distress 3.312 27.44 0.007 – 10.3 0.430 DDS-P Healthcare Team distress -0.483 0.617 0.065 – 5.84 0.674

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Discussion

The findings of this study revealed that adolescent females with T1DM have lower HbA1c levels showing better glycemic control, but higher levels of diabetes distress than males; adolescents with optimal glycemic control have shorter diabetes duration, are less affected by social surroundings and have lower levels of parent-teen relationship distress related to diabetes; also parents of adolescents using insulin pumps experience higher diabetes distress than parents of adolescents using multiple daily injections. It also showed that suboptimal diabetes glycaemic control in the analyzed sample is significantly associated only with longer diabetes duration, but not with other analysed diabetes-related, psychological, social factors.

Gender specific psychological impact of diabetes burden was also evident in another research from Lithuania, where diabetes distress was found to be significantly more pronounced in adolescent girls compared to adolescent boys, furthermore, diabetes distress in females was more expressed in

emotional aspect [59]. Similarly, other studies have found high distress levels to be more prevalent in young adult females with T1D compared with males [98]

In another study that was held in Lithuania adult females with T1DM had worse profiles of mood states than men [29]. Also, in our study we found that adolescent girls had worse POMS score than adolescent boys almost in all the subscales, though it was not statistically significant.

Gender difference in anxiety and depressive symptoms (higher levels in females) seem to emerge at the age of 13-14 years, also gender difference in self-esteem occurs during the period of adolescence (decline is larger among girls) [99].

Some studies found that depressive symptoms and anxiety to be associated with suboptimal metabolic control [21,26,42], we were not able to proof that in our study.

The adolescents with T1DM tend to report no difference or even a better quality of life compared to healthy peers. On the other hand, the parents of the adolescents with T1DM tend to report their adolescents’ health worse compared to parents of healthy adolescents [100-105].

The surrounding of the adolescent with T1DM can have a major influence on the disease control, in fact family conflicts were associated with lower well-being and depression [64,106-108] and

depressive symptoms in the adolescent tend to worsen the disease control [109].

Persisting suboptimal control of diabetes in adolescents can continue into adulthood which can increase the risk for complications remarkably [11].

In our study, a higher score of parent distress was in adolescents who used insulin pump and not multiple daily injections of insulin, this can be explained that at this age the parents of the T1DM adolescents still have a major role in the management of diabetes, and the installation of an insulin

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pump is often requested from the parent which is distressed about the management of their son or daughter, and see that multiple daily injections of insulin are not sufficient in maintaining an optimal glucose level. So, naturally those parents are more distressed about diabetes.

In our sample, parents reported a high teen management distress in the parent Diabetes Distress Scale, which means that the parents of diabetic adolescent see that an optimal disease control can not be sustained by their adolescent himself and without them.

The management of type 1 diabetes in children and adolescents is a challenging experience for the adolescent himself and to his family. The continuous need of special dietary management, the frequent glucose level testing and injecting insulin places a major strain on family functioning. Maintaining optimal glycemic control in the central element in the management of diabetes and preventing or delaying the diabetes complications that can arise [110]. When the diabetic control is optimal both the adolescents with T1DM and their mothers have a greater sense of cohesion within the family life [111].

Adolescence is a period of rapid biological changes accompanied by increasing physical, cognitive, emotional maturity, and hormonal changes which has the potential to complicate diabetes regulation. Type 1 diabetes adolescents display the worst glycemic control when compared to the other age groups [9,10], this increases the risk for developing disease-related complications [11,12].

The psychological well-being of the Lithuanian adolescents with type 1 diabetes has received a very little research attention, nor the possible consequence of emotional difficulties on the diabetes management of this period of age been investigated.

The purpose of this study was to focus a beam of light on the psychological and emotional problems which the adolescents with type 1 diabetes and their caregivers face, the differences among genders dealing with diabetes, the differences between the adolescents with an optimal disease control versus the adolescents with suboptimal control, and possible differences between adolescents to parents with higher education level versus parents with school degree only.

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Conclusions

6) Adolescent female patients with type 1 diabetes mellitus have better glycemic control and higher levels of diabetes distress than male patients.

7) Parents of adolescents using insulin pumps experience higher diabetes distress than parents of adolescents using multiple daily injections.

8) No differences in diabetes-related factors, emotional state, diabetes-related distress (in

adolescent patients and in their primary care-givers) and social factors in groups of adolescent patients with type 1 diabetes, having primary caregivers with lower and with higher education levels, were found.

9) Adolescents with optimal glycemic control have shorter diabetes duration, are less affected by social surroundings and their parents have lower levels of parent-teen relationship distress related to diabetes.

10) Suboptimal diabetes glycaemic control in the analysed sample is significantly associated only with longer diabetes duration, but not with other analysed diabetes-related, psychological, social factors.

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Recommendations

The results of this study suggest that:

The monitoring of the psychological health of children and adolescents with T1DM is increasingly recognized as an important element of care. Assisting the families of those adolescents to achieve a good relationship, trust, collaboration, and communication with their adolescents help in reducing parent-teen conflicts and promote optimal glycemic control.

Close attention need to be paid to psychological symptoms among adolescents with T1DM.

Incorporating brief psychological screening (symptoms of diabetes distress and emotional problems) into clinic visits may be helpful in identifying those symptoms in order to adjust the treatment plan. As the adolescents emerge into adulthood they become more independent, and it might be more difficult to change their glycemic control habits compared with when they are still in their adolescence years [15]. So, there is an obligation to start educating the adolescent with T1DM and his family about the importance of optimal control and how to achieve it as early as possible.

Positive psychological interventions and cognitive behavioral treatment are effective in enhancing well-being [97,112].

Family based interventions may promote better control of diabetes by reducing family conflicts

[73,74] and build a better relationship between the adolescent and his parents about the management of diabetes, so the parents trust that their adolescent is able to deal with diabetes and keep an optimal control by himself.

The goals are to improve the psychological well-being of adolescents with diabetes, build a solid relationship with their parents and decrease the distress and worry of the parents, which can promote a better control of diabetes.

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