|Year : 2014 | Volume
| Issue : 3 | Page : 173-178
Quality of life and self-esteem of children and adolescents with diabetes type 1
Youmna Sabri1, Ashraf Sharkawy2, Shwikar Farrag3, Hala El Boraie1
1 Psychiatry Department, Mansoura University, Mansoura, Egypt
2 Child Department, Mansoura University, Mansoura, Egypt
3 Child Mental Health Department, Faculty of Nursery
|Date of Submission||06-Oct-2014|
|Date of Acceptance||02-Nov-2014|
|Date of Web Publication||11-Nov-2014|
Hala El Boraie
Psychiatry Department, Mansoura University, Mansoura, Egypt
Source of Support: None, Conflict of Interest: None
Diabetes mellitus (DM) is one of the most common chronic diseases in children and adolescents and requires special self-care behaviors throughout life. Living with the requirements related to glycemic control, insulin therapy, diet plan, and physical activity may have a significant impact on the psychological functioning of not only the patients, but also their families.
The present study had the purpose of evaluating the health-related quality of life (HRQoL) and self-esteem (SE) of children and adolescents with type 1 diabetes mellitus (T1DM), analyzing the relationship between these constructs in this population and comparing these results with those of nondiabetic ones, and finding if there is association between metabolic control (HbA1c) and these psychosocial correlates (HRQoL and SE).
Materials and methods
Study participants included parents and their children/adolescents with type 1 diabetes who were 10-18 years old. The participants have had T1DM for more than 2 years. The control group consisted of 42 healthy children who were 10-18 years old. PedsQL 4.0 Generic Core Scales were designed to measure the core health dimensions in both healthy and patient populations. PedsQL 3.0 diabetic module (DM) was developed to measure diabetes-specific HRQoL, for youths with T1DM. Hare Area-Specific Self-Esteem Scale measures adolescents' feelings about their worth and importance among peers, as students, and as family members.
The mean total HRQoL scale scores (child self-report and parent proxy-reports) were 75.42 and 72.37 for diabetic patients and 94.80 and 96.83 for healthy ones, with significant difference (P < 0.001). In addition, diabetic patients showed lower SE (2.31) than healthy ones (2.05), as higher scores indicate lower SE. However, there were significant negative correlations between PedsQL 4.0 Generic Core Scale - both child and parent report - and SE scale scores in diabetic patients, whereas [Table 5] shows positive correlation between HbA1c levels and SE scores and insignificant negative correlation between HbA1c levels and school function scores in PedsQL among diabetic patients.
Diabetic patients have lower quality of life than healthy ones in the physical, emotional, and social domains. The SE and quality of life concepts are related, that is, the better the quality of life of diabetic patients, the higher the SE. Uncontrolled diabetes (increased level of HbA1c, 8.4%) did not affect PedsQL except for school function domain, but with insignificant statistical level. However, this suboptimal metabolic control affects the SE of children and adolescents.
Keywords: T1DM, HRQoL, self esteem
|How to cite this article:|
Sabri Y, Sharkawy A, Farrag S, El Boraie H. Quality of life and self-esteem of children and adolescents with diabetes type 1. Egypt J Psychiatr 2014;35:173-8
|How to cite this URL:|
Sabri Y, Sharkawy A, Farrag S, El Boraie H. Quality of life and self-esteem of children and adolescents with diabetes type 1. Egypt J Psychiatr [serial online] 2014 [cited 2021 Jun 19];35:173-8. Available from: http://new.ejpsy.eg.net/text.asp?2014/35/3/173/144348
| Introduction|| |
Diabetes mellitus (DM) is a chronic disease present in every country regardless of their stage of development and afflicts people in all socioeconomic classes. The incidence of type 1 diabetes mellitus (T1DM) is on the rise worldwide approximately by 3% per year, and this draws the attention to the seriousness and public health impact of the disease (Aanstoot et al., 2007). It is predicted that the number of cases will double within 10 years in young children (Patterson et al., 2009). Increasing numbers of youth with diabetes require intensive treatment programs to reduce the development of complications.
Intensive management increases the burdens placed on routines and relationships of children and their families (Rickert and Drotar, 2000). This intensive treatment implies in important transformations in the behavior of people with diabetes. In clinical practice, these necessary changes are reportedly not always easily incorporated, especially during adolescence - a phase when physiological changes can reflect in the psychological function (Flores Sullca and Bolamos Nina, 2002).
DM is one of the most common chronic diseases in children and adolescents and requires special self-care behaviors throughout life (Graue et al., 2003). Living with the requirements related to glycemic control, insulin therapy, diet plan, and physical activity may have a significant impact on the psychological functioning of not only the patients, but also their families (Kalyva et al., 2011). The sudden onset of the disease and the treatment required to control glycemia, as well as stress factors, cause sudden changes in the young person's lifestyle and interfere in their self-image and quality of life.
The stigma of having a chronic disease, the necessity of submitting oneself to control procedures in public places, and the risk for hypoglycemia, to which one is exposed by the therapy or by being careless about it, reinforce the condition of being different and can cause feelings of inferiority on the adolescent (Carson and Kelnar, 2000).
On the basis of such considerations found in the literature, diabetes interferes significantly with the adolescent's physiological and psychosocial function. Several studies have been developed to explain the impact of diabetes on the adolescents' development (Erkolahti et al., 2003). Thus, understanding how both diabetes and its treatment influence the child's quality of life becomes important (Eiser and Morse, 2001). Intensive treatment of type 1 diabetes often disrupts a child's usual activities, requires disease-focused behaviors from the child and family, and potentially impacts overall quality of life (Seid et al., 2000). Consequently, it becomes important to evaluate the overall quality of life of the child and adolescent with diabetes, considering disease management, physical symptoms, and normal developmental milestones, including school performance, social, and emotional development (Rickert and Drotar, 2000).
The evaluation of certain aspects such as the quality of life and self-esteem (SE) is an important tool for the comprehension of such impact, as the repercussions of the chronic condition can be evaluated, in the adolescent's perspective. It is believed that it is possible to develop more effective interventions, with the possibility of improving their SE and quality of life, favoring compliance with the treatment.
A growing number of studies have focused on studying the influence of DM, its complications, and handling of the individuals' quality of life. For some authors, quality of life has been as important a variable as metabolic control. Besides, it is believed that adolescents with DM are less susceptible to develop psychiatric disorders, with low SE among them (Garratt et al., 2002).
There are several definitions about the expression of quality of life and there is no consensus about its meaning. Aspects such as happiness, satisfaction, well-being, and achieving goals in life have been focused on, either implicitly or explicitly in their conception (Delamater et al., 2001).
The WHO defines quality of life as the perception of the individuals about their place in life, in the context of the culture and system of values in which they live and in relation to their goals, expectancies, standards, and concerns.
The concept was directed to the health field being named quality of life related to health, incorporating aspects such as the health state, damages, symptoms, and incapability (Andresen and Meyers, 2000). Health-related quality of life (HRQoL) has been progressively acknowledged as an essential outcome measure in clinical trials and health service research and evaluation (Varni et al., 2007). It is now well established that enhancing HRQoL in children with diabetes is as important as metabolic control and prevention of long-term complications (Emmanouilidou et al., 2008).
Like quality of life, there is no universal definition for what SE is. One of the definitions of this concept is reported as the evaluation of the individuals about themselves, how capable and important they feel through their approval and disapproval behaviors. The development of SE is a process that lasts throughout life, and is related to the interactions that the individuals have with their families and people who are significant to them (Ingersoll and Marrero, 1990).
Given the importance of the concepts presented above and their possible repercussions on the treatment, the present study had the purpose of evaluating the HRQoL and SE of children and adolescents with T1DM, analyzing the relationship between these constructs in this population and comparing these results with those of nondiabetic ones, and finding if there is association between metabolic control and SE and psychosocial well-being, measured by items of HRQoL.
| Research design and methods|| |
Study participants included parents and their children/adolescents with type 1 diabetes who were 10-18 years old. The participants have had T1DM for more than 2 years. The sample was collected during the period from January to June 2013 from the Endocrine Unit of Child Hospital, Mansoura University.
The control group consisted of 42 healthy children who were 10-18 years old, attending clinics for standard checkup for a sport activity or accompanying their parents during their clinic visits.
Eligible patients and families were sequentially approached until 90 agreed to participate, 90 of 104 approached patients. Most nonparticipating parents cited that they were not interested; the remainder stated that they did not have enough time to complete questionnaires. Four of the 104 participants had incomplete data and were excluded from analyses.
The participants and their parents were informed about the purpose and methods of the study verbally and in writing, as well as about the voluntary nature of the participation in the study. Before completing the questionnaires, the parents gave written consent, and the children and adolescents gave their assent.
Demographic and diabetes-related information form
The demographic form contained information on age and sex, and the diabetes-related information included age at disease diagnosis, duration of diabetes, and mean HbA1c.
At the routine diabetes visit, the research assistant conducted a structured, 10-15-min, joint interview (patient and parent) to gather demographic and diabetes-related information during the preceding month. Each child and parent also completed questionnaires which included the following:
Pediatric quality of life inventory 4.0 Generic Core Scale
PedsQL 4.0 Generic Core Scales (GCS) were designed to measure the core health dimensions in both healthy and patient populations (Varni, 2002). The generic module of the PedsQL comprises a physical and psychosocial subscale. The latter consists of an emotional, social, and school subscale. The GCS included physical functioning (eight items), emotional functioning (five items), social functioning (five items), and school functioning (five items).
The participants rated how much of a problem there has been in the previous month on a five-point Likert-type response scale (0 = never a problem; 1 = almost never a problem; 2 = sometimes a problem; 3 = often a problem; 4 = almost always a problem). Items were reverse-scored and linearly transformed to a scale ranging from 0 to 100 (0 = 100; 1 = 75; 2 = 50; 3 = 25; 4 = 0). Total scores and subscale scores were computed as the sum of the items divided by the number of items answered. The higher score indicated better quality of life. If more than 50% of the items on the scales were missing, the scale score was not computed.
Pediatric quality of life inventory 3.0 diabetes module
PedsQL 3.0 DM was developed to measure diabetes-specific HRQoL, for youths with T1DM. The multidimensional DM module encompassed five subscales, including diabetes symptoms (11 items), treatment barriers (four items), treatment adherence (seven items), worry (three items), and communication (three items). The scoring method is the same as the one of GCS. Both modules were created as a self-administered instrument. Scales are comprised of parallel child self-report and parent proxy-report formats. Diabetic participants and their parents completed both the GCS and the DM, whereas the healthy peers and their parents completed only the GCS.
Permission to use the Arabic version of GCS and DM (user agreement) was obtained from the developer of the original English version, Dr James Varni, through Mapi Institute by interpersonal communication.
The hemoglobin A1c (HbA1c) values were extracted from medical records. HbA1c levels are recorded as a percentage of the total hemoglobin. Currently, there is no scale to determine the clinical severity of T1DM, as our participants had no complications. Therefore, the disease status was determined according to the target indicators of glycemic control recommended by ISPAD: HbA1c values below 7.5% were considered as optimal metabolic control, values between 7.5 and 9% were considered as suboptimal metabolic control, and values above 9% were defined as high-risk metabolic control (Rewers et al., 2009).
Hare Area-Specific Self-Esteem Scale
This scale, developed by Shoemaker (1980), measures children and adolescents' feelings about their worth and importance among peers, as students, and as family members. Students are asked to indicate the extent to which they agree or disagree with 10 statements. Translation and back translation were carried out by the researchers.
Scoring and analysis
Point values are assigned as follows:
Strongly agree = 4,
agree = 3,
disagree = 2,
strongly disagree = 1.
Items 1, 3, 5, 6, and 9 are reverse coded. Values are summed and divided by the total number of items (10) for each respondent. The intended range is 1-4, with a high score indicating a greater feeling of self-worth.
| Results|| |
Demographic characteristics of the diabetic and control groups are presented in ([Table 1]). The diabetic group consisted of 90 children and adolescents with a mean age of 11.89 ± 2.62 years. There were 61 female and 29 male individuals who have had T1DM for a considerable time of 5.77 years. Their mean value for HbA1c was 8.47% (normal = 4.5-6). However, the control group consisted of 34 female and eight male individuals with a mean age of 10.88 ± 1.97 years.
The majority of participants (95%) resided with two parents and had middle-income socioeconomic backgrounds.
[Table 2] represents the scores of the PedsQL GCS for diabetic and healthy children. In the child self-report scale, children with diabetes reported significant lower scores in the physical, emotional, and social domains, but nonsignificant higher scores in the school function domains, whereas in the parent proxy-report, diabetic children had significant lower scores in all domains.
|Table 2 PedsQL Generic Core Scale parent proxy-report and|
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The mean total scale scores (child self-report and parent proxy-reports) were 75.42 and 72.37 for diabetic children and 94.80 and 96.83 for healthy children.
In addition, it was found that parent proxy-reports were 64.81 ± 15.94 for male individuals and 75.96 ± 15.00 for female individuals with diabetics, and 97.02 ± 4.12 for healthy male individuals and 96.79 ± 5.52 for healthy female individuals, with significant difference between the two groups (P = 0.002).
[Table 3] demonstrates mean and SD of item scores of the diabetes module for children with T1DM. The mean total score was 66.56 and 61.66 for self-report and parent proxy-report, respectively.
Hare Area-Specific Self-Esteem Scale scores are presented in [Table 4]; diabetic children showed lower SE (2.31 ± 0.27) than healthy children (2.05 ± 0.24), as higher scores indicate lower SE.
|Table 4 Hare Area-Specifi c Self-Esteem Scale scores and correlation with GCSQL in the diabetic group and the healthy group (higher scores indicate lower self-esteem)|
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In addition, there was a negative significant correlation between PedsQL GCS (child self-report and parent proxy-reports) and SE scale scores among diabetic patients (P = −0.345, sig = 0.001; P = −0.308, sig = 0.003, respectively). However, the correlation was negative nonsignificant in healthy ones.
[Table 5] shows that there is a positive correlation between HbA1c levels and SE scores among diabetics, whereas there is insignificant negative correlation between HbA1c levels and school function scores in PedsQL GCS.
|Table 5 Correlation between HbA1c, self-esteem, and PedsQL Generic Core Scale in diabetics|
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| Discussion|| |
Children and adolescents who are carriers of a chronic disease, such as T1DM, have to face the demands that stem from this disease and its treatment in addition to dealing with the usual aspects of their age.
The evaluation of the psychosocial function of this group becomes increasingly more essential. Usually, the central focus is on the metabolic control, without an evaluation of the impact of the disease and treatment or how they affect different aspects of the quality of life and SE of those children and adolescents who are affected by metabolic control.
In concern to the glycated hemoglobin, the mean value for HbA1c was 8.47%; values between 7.5 and 9% are considered as suboptimal metabolic control and values above 9% are defined as high-risk metabolic control. Hence, these values show an inadequate metabolic control.
Analysis of the scores of the PedsQL GCS for diabetic and healthy children show that, in the child self-report scale, children with diabetes reported significant lower scores in the physical, emotional, and social domains and nonsignificant higher scores in the school function domains; this may be because of the diabetic children trying to feel superior in one aspect of life. However, in the parent proxy-report, diabetic children had significant lower scores in all domains, which may be an indicator of the parental perception of the child's adjustment at school and level of social, physical, and emotional functioning.
The mean total scale scores (child self-report and parent proxy-reports) were higher (75.42 and 72.37) for diabetic patients than for healthy ones (94.80 and 96.83). These results are similar to HRQoL scores of the Iranian children (Jafari et al., 2011) and the HRQoL scores are lower than in Greece (Emmanouilidou et al., 2008), the USA (Varni et al., 2003), and the Netherlands (Nuboer et al., 2008) using the PedsQL 4.0 GCS and the PedsQL 3.0 DM.
Noticeably, our diabetic female individuals group denoted significantly higher HRQoL scores than male individuals in the parent proxy-reports. Multiple studies have shown these sex differences in chronic diseases including diabetes (Graue et al., 2003; Kalyva et al., 2011). These differences are rather due to the perception of health than the actual health status, as there were no differences in clinical parameters in our patients. We did not find this underestimation in the healthy youths. It raises the assumption that the parents may overprotect their diabetic boys.
The Hare Area-Specific Self-Esteem Scale scores show that diabetic children have lower SE than healthy children.
In addition, there is a negative (as higher scores indicate lower SE) high significant correlation (P < 0.001) between GCSQL (child self-report and parent proxy-reports) and SE scale scores among diabetic children, showing that the better the quality of life, the better the SE. This result can be explained because quality of life includes the physical, emotional, school, and social domains, aspects that are fundamental for SE in children and adolescents.
Positive and significant correlations between quality of life and SE were also found in another study, which compared the DQOLY scores with the SE instrument OSEI (Offer Self Esteem Inventory) in 77 adolescents with T1DM (Ingersoll and Marrero, 1990). In another study (Simeoni et al., 2000) conducted on 2941 French adolescents of the general population, the converging validity of a quality of life instrument named VSP-A was confirmed by the positive and significant correlation with the SE instrument .
In contrast to our expectation, the HRQoL did not improve glycemic control. This result is in line with previous studies (Grey et al., 1998; Hood et al., 2007). The researchers mentioned that family functioning along with baseline HbA1c proved to be an important determinant of glycemic control at follow-up.
| Conclusion|| |
Children with diabetes have lower quality of life than healthy children in the physical, emotional, and social domains.
The SE and quality of life concepts are related - that is, the better the quality of life of adolescents with T1DM, the higher the SE.
Final considerations and recommendations
Periodic evaluation and discussion of the adolescent HRQoL as an integral part of diabetes care is recommended to ensure recognition of the teenagers' perspective, psychosocial barriers, and promote healthy coping. We set out to test the effects of systematic monitoring and discussion of HRQoL of adolescents with type 1 diabetes. We hypothesized that this would have a positive effect on the well-being and satisfaction with care of adolescent subsequently improving self-care and glycemic control.
Quality of life and SE deterioration can result in psychosocial disorders and jeopardize compliance with the treatment. Therefore, the results of this study contribute for the improvement of knowledge consolidating them so that this type of evaluation can become a part of the clinical practice in the future.
As the medical community works to intensify blood glucose control, interventions that call for improvement of the quality of life of diabetic children should be performed. The assessment of the quality of life must be part of the routine care of these children and has to be performed at least annually. In addition, expanding the assessment of family functioning as part of periodic monitoring should therefore be considered.
These psychosocial strategies will promote welfare and influence in the compliance with the therapeutic proposals.
| Acknowledgements|| |
| References|| |
Aanstoot HJ, Anderson BJ, Daneman D, Danne T, Donaghue K, Kaufman F, et al.
(2007). The global burden of youth diabetes: perspectives and potential. Pediatr Diabetes 8:1-44.
Andresen EM, Meyers AR (2000). Health-related quality of life outcomes measures. Arch Phys Med Rehabil 81:S30-S45.
Carson CA, Kelnar CJ (2000). The adolescent with diabetes. J R Coll Physicians Lond 34:24-27.
Delamater AM, Jacobson AM, Anderson B, Cox D, Fisher L, Lustman P, et al.
(2001). Psychosocial Therapies Working Group. Psychosocial therapies in diabetes: report of the Psychosocial Therapies Working Group. Diabetes Care 24:1286-1292.
Eiser C, Morse R (2001). The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 22:248-256.
Emmanouilidou E, Galli-Tsinopoulou A, Karavatos A, Nousia-Arvanitakis S (2008). Quality of life of children and adolescents with diabetes of Northern Greek origin. Hippokratia 12:168-175.
Erkolahti RK, Ilonen T, Saarijärvi S (2003). Self-image of adolescents with diabetes mellitus type-I and rheumatoid arthritis. Nord J Psychiatry 57:309-312.
Flores Sullca T, Bolamos Nina E (2002). Características psicológicas de adolescentes: Puno, Peru. Acta Paul Enferm 15:7-16.
Garratt AM, Schmidt L, Fitzpatrick R (2002). Patient-assessed health outcome measures for diabetes: a structured review. Diabet Med 19:1-11.
Graue M, Wentzel-Larsen T, Hanestad BR, Båtsvik B, Søvik O (2003). Measuring self-reported, health-related, quality of life in adolescents with type 1 diabetes using both generic and disease-specific instruments. Acta Paediatr 92:1190-1196.
Grey M, Boland EA, Yu C, Sullivan-Bolyai S, Tamborlane WV (1998). Personal and family factors associated with quality of life in adolescents with diabetes. Diabetes Care 21:909-914.
Hood KK, Butler DA, Anderson BJ, Laffel LM (2007). Updated and revised Diabetes Family Conflict Scale. Diabetes Care 30:1764-1769.
Ingersoll GM, Marrero DG (1990). Self-esteem and diabetes control in adolescents: a reassessment of a recurring question. Diabetes 39:640.
Jafari P, Forouzandeh E, Bagheri Z, Karamizadeh Z, Shalileh K (2011). Health related quality of life of Iranian children with type 1 diabetes: reliability and validity of the Persian version of the PedsQL™ Generic Core Scales and Diabetes Module. Health Qual Life Outcomes 9:104.
Kalyva E, Malakonaki E, Eiser C, Mamoulakis D (2011). Health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (T1DM): self and parental perceptions. Pediatr Diabetes 12:34-40.
Nuboer R, Borsboom GJ, Zoethout JA, Koot HM, Bruining J (2008). Effects of insulin pump vs. injection treatment on quality of life and impact of disease in children with type 1 diabetes mellitus in a randomized, prospective comparison. Pediatr Diabetes 9:291-296.
Patterson CC, Dahlquist GG, Gyürüs E, Green A, Soltész GEURODIAB Study Group (2009). Incidence trends for childhood type 1 diabetes in Europe during 1989-2003 and predicted new cases 2005-20: a multicentre prospective registration study. Lancet 373:2027-2033.
Rewers M, Pihoker C, Donaghue K, Hanas R, Swift P, Klingensmith GJ (2009). Assessment and monitoring of glycemic control in children and adolescents with diabetes. Pediatr Diabetes 10:71-81.
Rickert KA, Drotar D. Drotar D2000; Adherence to medical treatment in pediatric chronic illness: critical issues and answered questions. In Promoting adherence to medical treatment in chronic childhood illness: concepts, methods, and interventions, Psychology Press; 1 ed. 3-33
Seid M, Varni JW, Kurtin PS (2000). Measuring quality of care for vulnerable children: challenges and conceptualization of a pediatric outcome measure of quality. Am J Med Qual 15:182-188.
Shoemaker AL (1980). Construct validity of area specific self-esteem: the Hare Self-Esteem Scale. Educ Psychol Meas 40:495-501.
Simeoni MC, Auquier P, Antoniotti S, Sapin C, San Marco JL (2000). Validation of a French health-related quality of life instrument for adolescents: the VSP-A. Qual Life Res 9:393-403.
Varni J. Linguistic validation of the PedsQLTM - a quality of life questionnaire
. Mapi Research Institute; 2002, Available at: http://www.mapi-research-inst.com/lvprocess.asp.
Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL (2003). The PedsQL™ in type 1 and type 2 diabetes. Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Type 1 Diabetes Module. Diabetes Care 26:631-637.
Varni JW, Limbers CA, Burwinkle TM (2007). How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 5:1.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]