The Impact of Diabetes Distress on the Glycemic Control Among Adolescents and Youth With Type 1 Diabetes in Two Tertiary Centers, Jeddah, Saudi Arabia

Introduction Adolescents with type 1 diabetes (T1D) experience multiple symptoms of diabetes distress including fear of acute complications such as severe hypoglycemia which may lead to permanent brain damage or death. They also experience fear of acute hyperglycemia that can lead to diabetic ketoacidosis as well as chronic complication including diabetic nephropathy and retinopathy. No previous research was conducted in Saudi Arabia to assess diabetes distress among adolescents and youth with T1D. This study aimed to assess diabetes distress in adolescents and youth with T1D and its relation to clinical characteristics, glycemic control and diabetes co-morbidities. Methodology A cross-sectional study was conducted on 158 patients at King Abdulaziz University Hospital and Dr. Erfan and Bagedo General Hospital, Jeddah, Saudi Arabia. Data about participants’ characters, episodes of DKA, last HbA1c level, diabetes co-morbidities were collected. Diabetes distress (DD) was assessed by the Problem Areas in Diabetes (PAID) and Diabetes Distress Scale (DDS) scores. Results The prevalence of diabetes distress among our population of adolescents with T1D was 24.1%. The mean scores of PAID and DDS were 43.56 ± 13.84 and 2.22 ± 1.05, respectively. Patients with suboptimal HbA1c had significantly higher mean PAID and DDS scores. There is also a significant positive correlation between HbA1c level and number of ketoacidosis episodes. A highly significant positive correlation was found between PAID and DDS scores. Conclusion This study found that participants with uncontrolled HbA1c had significantly higher mean PAID and DDS scores with a significant positive correlation between the last HbA1c measured level and number of ketoacidosis attacks and PAID and DDS scores. Future studies on larger samples are needed to implement interventions to minimize the burden of diabetes distress among adolescents with T1D.


Introduction
Diabetes mellitus is a highly prevalent disease with an estimated number of affected individuals reaching 382 million worldwide [1]. The prevalence of diabetes is expected to increase to 583 million by 2035 [1]. Nationally, diabetes is considered the main health problem that affects 24% of the Saudi population [2]. Type 1 diabetes (T1D) is the most common type of diabetes among children and adolescents [3]. There is a significant rise in the incidence of T1D worldwide [3]. According to Diabetes Atlas (8th edition), 35,000 children and adolescents in Saudi Arabia are affected by T1D, which makes Saudi Arabia the 4th country worldwide in terms of the incidence rate (33.5 per 100,000 people) and rank 8th country worldwide in terms of the prevalence of adolescents and children with T1D [4].
T1D is a physically and emotionally demanding disease for both adolescents and youth with T1D [5]. Adolescents with T1D experience different forms of emotional distress related to their illness including fear of acute complications such as severe hypoglycemia, which could lead to permanent brain damage or death and acute hyperglycemia that may lead to diabetes ketoacidosis (DKA) [6]. They also are persistently worried about chronic diabetes complications, i.e., chronic kidney disease, renal failure, diabetic retinopathy and blindness [7].
Adolescence is a transitional period where adolescents go through many psychological and physical changes. This transition period of life leads to multiple psychological stressors according to one study [8]. Adolescents and youth with T1D suffer from additional distress because of having to deal with the daily ongoing demands of managing T1D while going through this critical period of life during the transition to adult life [9]. This fact leads to the development of the term: "Diabetes Distress", which is defined as the negative emotional impact of living with diabetes [10].
According to one study, adolescents with T1D who reported diabetes distress indicate that worrying about the future and the possibility of suffering from serious complications was the most common source of their diabetes distress [7]. They also feel overwhelmed by their diabetes regimen and feel angry when thinking about living with diabetes [7]. Identifying diabetes distress has a very important clinical value since many studies reported a strong correlation between reporting diabetes distress and deteriorating self-care and poor glycemic control in adolescents and youth with T1D [11].
A study was conducted at the University of Florida found a positive correlation between HbA1c and diabetes distress, such that those adolescents who reported poor glycemic control had a higher score in the Diabetes Distress Scale (DDS) indicating a higher level of emotional distress related to diabetes [12].
There is a wealth of evidence that addressed the impact of diabetes distress on adults with diabetes. For example, one study reported a higher prevalence of diabetes distress among adults with T1D who reported lower quality of life and had poor glycemic control [13]. Other studies were conducted locally to assess diabetes distress among adults with type 2 diabetes mellitus (T2DM) in Saudi Arabia reported higher diabetes distress among individuals with poor glycemic control in one study [14]. The challenge of controlling diabetes regimen was reported as the main source of diabetes distress among adults with T2DM who participated in another study [15].
There was no previous study conducted to assess diabetes distress among adolescents and youth with T1D in Saudi Arabia. Thus, this study aimed to assess the relationship between the diabetes distress and the glycemic control among adolescents and youth with T1D and its relation to patient's characters, glycemic control (HbA1c) level and the presence of diabetes co-morbidities.

Materials And Methods
This cross-sectional study was done from January 2019 to December 2020 and was approved by Biomedical Ethics Research Committee in King Abdulaziz University (approval number: 704-19; approval date: December 02, 2019). We recruited 158 participants from the pediatric and adult diabetes and endocrinology clinics at King Abdulaziz University Hospital and Dr. Erfan and Bagedo General Hospital, Jeddah, Saudi Arabia.
The inclusion criteria included adolescents and youth with T1D, with an age between 10 and 19 years and youth age between 19 and 24 years, who spoke Arabic. All participants had at least one HbA1c measured during their follow-up (controlled defined as HbA1c <7.5% and uncontrolled as HbA1c >7.5%) and they provided written consent. We excluded all patients with T1D who were diagnosed with T1D <6 months prior to recruitment, T1D patients with developmental delay, autism or diagnosed mental health conditions such as depression or eating disorders and patient who could not provide a written informed consent.
The study team approached any adolescent or youth with T1D who met the eligibility criteria who attended the clinic. The study team explained the study aim and explained the elements of the consent sheet. Adolescents who agreed to participate signed the consent sheet prior to their participation. Younger adolescents (10-11 years) provided assent to participate in the study.
A predesigned checklist was prepared to collect data about participants' demographic information: age, sex, nationality, income, parental level of education, parental marital status, number of previous episodes with DKA, last 3 HbA1c levels. In addition to data about diabetes co-morbidities (hypothyroidism, hypertension, celiac disease, kidney and eye disorders).
The second section of the checklist included the Problem Areas in Diabetes (PAID) [16], Diabetes Distress Scale (DDS) [17]. The DDS is a 17-item questionnaire that uses a Likert scale with each item, scored from 1 (no distress) to 6 (serious distress). A mean item score of ≥ 3 was taken as a level of distress worthy of clinical attention. The PAID scale is another tool for assessing diabetes distress in patients with diabetes. It consists of a 20-item questionnaire that measures diabetes-related emotional distress, and involves a range of negative emotional problems of diabetic patients [18]. Statements are given a score ranging from 0 (not a problem) to 4 (a serious problem), where higher scores indicate higher levels of diabetes-related distress.
A native Arabic speaker with high English proficiency and a medical background translated the questionnaires from English to Arabic. Bilingual experts evaluated the translations for logic and clarity. The questionnaires were then given to a native English speaker with high Arabic proficiency to translate back to English. The final English versions were compared to the original English questionnaires for accuracy. Arabic questionnaires were pre-tested using a focus group similar to the final sample group to ensure all questions were clear and unambiguous [15].
Data were analyzed using (SPSS) version 25 (IBM Corp., Armonk, NY). The mean and standard deviation (mean ± SD) are reported for continuous variables. While categorical variable was expressed as numbers and percentages, and quantitative data were expressed as mean and standard deviation. For qualitative data, independent sample t-test and one-way ANOVA tests were applied for parametric variables and Mann-Whitney and Kruskal-Wallis tests were applied for non-parametric variables. Correlation analysis was done using the Spearman's test for non-parametric variables and Pearson's test for parametric variables. A pvalue of <0.05 was considered statistically significant.

Results
The mean age of the study's participants was 15.36 ± 3.99 years (   Figure 1 shows that the prevalence of participants who had a DDS ≥ 3 indicating a level of distress worthy of clinical attention was 24.1%. Table 2 shows that a significant positive correlation was found between poor glycemic control (HbA1c level >7.5%) DDS and PAID score (p = 0.004) The table also showed a significant positive correlation between number of ketoacidosis episodes, and PAID and DDS scores (p = 0.002). There were no correlations between the presence of diabetes co-morbidities (hypothyroidism, wheat allergy and hypertension) and diabetes complications including diabetic retinopathy and nephropathy and DDS and PAID score ( Table 3 and Table  4). There was also no correlation between DDS and PAID score and patients' age, nationality, income and parental education or marital status.      Figure 2 shows that a highly significant positive correlation was found between PAID scores and DDS scores (p=< 0.05).

FIGURE 2: Spearman correlation analysis between Problem Areas in
Diabetes scores and Diabetes Distress Scale scores.

Discussion
This study aimed to assess diabetes distress in adolescents and youth with T1D and its relation to patient's characters, glycemic control (HbA1c level), and presence of diabetes co-morbidities in Saudi Arabia.
It was found that patients with uncontrolled HbA1c had a significant higher PAID and DDS scores. This study is consistent with a previous systematic review which showed high prevalence of diabetes distress among adolescents with T1D and identified a positive correlation between suboptimal glycemic control and diabetes distress among adolescents with T1D [19].
This study is also consistent with findings in previous study which utilized PAID score to estimate the relationship between diabetes distress and glycemic control in 3489 individuals with T1D or T2D. PAID score quartile was markedly correlated with poor glycemic control (HbA1c ≥53 mmol/mol [7.0%]), with a significant linear trend (p = 0.03) [20].
A high prevalence of adolescents with T1D with low economic status was identified in our population of patients with T1D reaching 43%.
The relationship between diabetes distress and diabetes duration was not consistent in the literature. In one previous study, a significant positive correlation between PAID scores and diabetes duration was reported in which that longer diabetes duration was associated with higher PAID score [21]. We haven't identified a significant correlation between PAID scores and T1D duration, our finding endorsed other findings from previous literature [22,23]. This study found a significant positive correlation between PAID scores and DDS scores.
A limitation of this study is the self-administered questionnaire used that may have a recall bias.

Conclusions
This study found that participants with uncontrolled HbA1c had significant higher mean PAID and DDS scores with a significant positive correlation between last HbA1c measured level and number of ketoacidosis episodes and PAID and DDS scores. A highly significant positive correlation was found between PAID and DDS scores. There is a need for future studies assessing diabetes distress among Saudi adolescents and youth with Type 1 Diabetes that include a larger sample. Results of these studies will help in improving the understanding of the trend and the causes of diabetes distress among adolescents with T1D in Saudi Arabia, this is important step to suggest and implement interventions to minimize the effect of diabetes distress among this age group.