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Diabetes-Specific Quality of Life of Korean Children and Adolescents With Type 1 Diabetes Sunjoo Boo, RN, PhD, Youngmee Ahn, RN, PhD, Ji Eun Lee, MD, PhD, Narae Kang, RN, MS, Heesook Kang, RN, MS, and Min Sohn, RN, PhD Sunjoo Boo, RN, PhD, is an Assistant Professor at the College of Nursing, Ajou University, Suwon, South Korea, Youngmee Ahn, RN, PhD, is a Professor at the Department of Nursing, Inha University, Incheon, South Korea, Ji Eun Lee, MD, PhD, is an Associate Professor at the Department of Pediatrics, Inha University Graduate School of Medicine, and Inha University Hospital, Incheon, South Korea, Narae Kang, RN, MS, is a Doctoral Student at the Department of Nursing, Inha University, Incheon, South Korea, Heesook Kang, RN, MS, is a Nurse at the Department of Pediatrics, Inha University Hospital, Incheon, South Korea, and Min Sohn, RN, PhD, is an Associate Professor at the Department of Nursing, Inha University, Incheon, South Korea.
Search terms: Child, depression, diabetes mellitus, Korean, quality of life Author contact: [email protected], with a copy to the Editor: [email protected] Conflict of interest: There is no conflict of interest.
PURPOSE: The purpose of this study was to explore the quality of life of children in Korea with type 1 diabetes and related factors. METHODS: Children were recruited from a diabetes camp. Data were collected using four instruments: the PedsQL™ 3.2 Diabetes Module, Self-Efficacy for Diabetes Self-Management, the Center for Epidemiological Studies Depression Scale for Children, and the Diabetes Management Behavior Scale. RESULTS: Children who were older (t = 2.197, p = .041), male (t = −3.579, p = .002), and less depressed (t = −2.859, p = .010) were more likely to have better quality of life. CONCLUSION: Further research is needed in children with type 1 diabetes in countries where this disease is rare, and governmental support and public awareness are limited. ࠆˮֹࢳ ˱ࠉقЕࢿкϵձɼऑଞ˲ࢉ߅Ѱঐܕϗࢂкϵઞࢇࢂۓ۽ ओࡶۛଜ̛ࡢଥݤଭѸ߹Ь ࠆˮ،˱ࠉق أձࡢଥкϵ৪߾ॳࠆଞ߅ѰҚࡶоۘࡳԻɼˈؿ۶ח एձࢇࡈଜࠆՎձܹखଜࠑЬࡈیѹѦ˱Е3HGV4/3.2 Diabetes Module, Self-Efficacy for Diabetes Self-Management, the Center for Epidemiological Studies Depression. Scale for Childrenthe Diabetes Management Behavior Scale ձ૦ଡଜࠑЬ ʹ˒ Οࢇɼքˈ(t = 2.197, p = .041)Χ(ֲࢇط۽t = −3.579, p = .002)ࡉࡌଞ ʃࢽࢇࢶࡵ(t = −2.859, p = .010)߅ѰࢊܹԼࢂۓओࢇϩߑЬ ϟࡿ ࢿкϵ؈ۢթࢇά߅ۘоࢶࡳԻࢽٕࢂएࡕ˕оࣸҚࢂࢉࡵࢶࢇݥ ˲ɼձоۘࡳԻଞЬߦଞࠉ˱ɼଗࡁଜЬ
Worldwide, 180 million children and adolescents have type 1 diabetes, and by 2030 its prevalence is estimated to double (World Health Organization, 2011). Type 1 diabetes is one of the most common chronic diseases in children living in Northern Europe and North America (Forlenza & Rewers, 2011). Thus, most studies to date have been conducted in these regions. In Korea, type 1 diabetes is rare, but its incidence among children and adolescents under 15 years old has slowly increased from 1.06 per 100,000 in 1994 (Rhee, 2003) to 1.36 per 100,000 in 2000 (Shin, 2008). Although the incidence and prevalence of type 1 diabetes vary between countries and ethnicities, researchers and clinicians recognize that the disease has a considerable impact on affected
© 2015 NANDA International, Inc. International Journal of Nursing Knowledge Volume ••, No. ••, •• 2015
families and children, regardless of gender, age, or ethnicity (Soltesz, Patterson, & Dahlquist, 2007). Children with type 1 diabetes and their families experience frequent complications, depression, family conflicts, social isolation, and financial distress (de Wit et al., 2008; Stewart, Rao, Emslie, Klein, & White, 2005). Furthermore, children in countries like South Korea, where the incidence of this disease is low, may experience greater difficulties because governmental support and public awareness are lacking (Puri, Sapra, & Jain, 2013). Health-related quality of life (QOL) is an important indicator of individual health, particularly for those with chronic health conditions. However, it has been studied less frequently in children and adolescents than in adults. Nonethe-
1
Diabetes-Specific Quality of Life of Korean Children less, the few studies that have been conducted have noted the value of QOL in the management of diabetes in children. In particular, children with a higher QOL exhibit better glucose control, better growth and development, and fewer diabetes-related complications (Matziou et al., 2011). Furthermore, many clinicians and researchers agree that QOL is a useful indicator in designing more effective treatment regimens and programs and monitoring their effectiveness (Ingerski, Laffel, Drotar, Repaske, & Hood, 2010). QOL for children with type 1 diabetes sometimes appears better than for children with other chronic diseases, such as asthma, cancer, or kidney disorders (Varni, Limbers, & Burwinkle, 2007). However, QOL in some respects is poorer for the former. For example, researchers have found that children with type 1 diabetes experience more emotional dysfunction than children who have asthma, a chronic gastrointestinal disorder like irritable bowel syndrome, an endstage renal disorder, or heart disease (Varni et al., 2007). Furthermore, the QOL of children and adolescents with type 1 diabetes depends on demographics and clinical and psychosocial conditions. Studies of children in Norway (Frøisland et al., 2013), Greece (Matziou et al., 2011), and the United States (Hilliard et al., 2013) have shown that better QOL is associated with younger age, male gender, a lower HbA1c, a shorter disease duration, and the absence of complications. In addition to demographic and clinical factors, other studies recognized that psychological and behavioral factors are also associated with QOL in children with diabetes. For example, children with lower self-efficacy, more depressive feelings, and deficient ability to manage diabetes have poorer QOL (Abolfotouh, Kamal, El-Bourgy, & Mohamed, 2011; Matziou et al., 2011). These findings highlight the importance of home and school for better QOL in these children. These results are also consistent with previous studies that home and school are where children strengthen their self-efficacy, pursue more positive emotions, and achieve better diabetes management behaviors in the continuity of diabetes care (American Association of Diabetes Educators, 2014). Nevertheless, school nurses and teachers seem less aware of diabetes care, and this circumstance is one of parents’ concerns in diabetes care (Newbould, Francis, & Smith, 2007). In fact, diabetes care, unlike asthma, is still not included as a school nursing in the Nursing Intervention Classification (NIC; Bulechek, Butcher, Dochterman, & Wagner, 2013). Data on the QOL of Korean children with type 1 diabetes are limited. We could find only one such study (Han et al., 2013). In that study, Han et al. (2013) described QOL in Korean children with type 1 diabetes using one of the PedsQL™ diabetes modules and found it to be low in these children. Currently, two versions of PedsQL™ diabetes module are available: the 3.0 version and the 3.2 version. Although these versions are alike in most respects, they were developed for children with chronic and acute diabetic conditions, respectively. However, the researchers who developed these modules recently recommended that the 3.2 version replace the 3.0 version in clinical research 2
S. Boo et al.
and practice for all patients with newly diagnosed, stable, or long-standing diabetes (Varni et al., 2013). Han et al., who used the 3.0 module, found slightly lower Cronbach’s alpha values and weaker correlations with parent proxy responses in some subdomains. In addition, they did not explore factors associated with their participants’ QOL, for example psychosocial factors, which could shed light on how to improve QOL. The present study was undertaken to explore diabetesspecific QOL in Korean children and adolescents with type 1 diabetes using the PedsQL™ 3.2 Diabetes Module. We chose it (Varni et al., 2013) because the instrument uses expressions and meanings that are appropriate to Korea’s language, culture, and clinical environment. In addition, the module has been adapted for use with children who have a wide range of diseases; most of these modules have been tested for validity and reliability in various languages. We also performed psychometric evaluation of the K-PedsQL 3.2 Diabetes Module, including reliability and validity testing. To investigate its validity, we explored associations between the K-PedsQL 3.2 Diabetes Module and demographic, clinical, and psychosocial variables, including selfefficacy, diabetes management behaviors, and depressive mood. Methods Design and Sample This was a cross-sectional descriptive study. Participants were children and adolescents who attended a diabetes camp established by a university hospital in Incheon, South Korea. To be included in the study, individuals had to be aged 8–18 and diagnosed with type 1 diabetes. Age 8 has been recognized to be the minimum age for children to provide self-report data for research purposes (Ravens-Sieberer & Bullinger, 2002). Children were excluded from the study if they had received medical care for diabetes at other hospitals; this step ensured the reliability of clinical information. Researchers approached all children who attended the camp and identified those who met the study’s inclusion criteria. Data were collected from August 1, 2012 to January 31, 2013. Measurements Data on demographics, clinical information, QOL, selfefficacy, depression, and diabetes management were collected. With the exception of demographics and clinical information, measures were originally written in English, and thus required translation into Korean. Permission to use these instruments was obtained from their developers. No permission was required to use the Center for Epidemiological Studies Depression Scale for Children (CES-DC) because it is in the public domain. For components that required translation, forward translation into Korean was initially done by two translators, who then reconciled differences. This version was
S. Boo et al.
Diabetes-Specific Quality of Life of Korean Children
then back-translated into English by an independent bilingual translator with clinical experience as a nurse in the United States and Korea to check for loss of meaning. The original English version was then compared with the back-translated version. Small grammatical changes were made, but no substantial differences in expression and meaning of words were found between the two versions. Demographics and clinical information, such as sex, age, age at diagnosis, duration of diabetes, weight, and height, were obtained during face-to-face interviews with parents. Recent HbA1c levels, amount of insulin injected per day, history of diabetes-related complications, and hospital admissions were extracted from each participant’s medical record. PedsQL™ 3.2 Diabetes Module. The PedsQL™ 3.2 Diabetes Module has two age-specific versions for children and adolescents, 8–12 years and 13–18 years, respectively. We used the 8- to 12-year-old version of the 3.2 module to all study participants to allow comparisons to be made between children and adolescents in statistical analysis. Only one difference existed between versions of two age groups. The 13- to 18-year-old version has one more question, “I worry about the long-term complications of diabetes.” The 3.2 module for children aged 8–12 comprises 32 items in five subscales: diabetes symptoms (15 items), treatment barriers (5 items), treatment adherence (6 items), worry (2 items), and communication (4 items). A 5-point Likert scale was used, which ranges from 0 (never a problem) to 4 (almost always a problem). Items were reversely scored and linearly transformed to a range of 0–100. Total scores were calculated by averaging item scores. Higher scores indicated better diabetes-specific QOL and fewer diabetic symptoms or problems. Self-Efficacy for Diabetes Self-Management (SEDM). Self-efficacy is based on social cognitive theory. Bandura (1986) defined self-efficacy as an individual’s judgment of his/her ability to perform actions required to attain target goals. Because children and adolescents with type 1 diabetes must manage their disease and maintain healthy behaviors throughout life, they must achieve a high level of self-efficacy. In fact, self-efficacy has been shown to be positively associated with diabetes management and glucose control in adolescents with type 1 diabetes (Iannotti et al., 2006). The 10-item SEDM questionnaire measures self-efficacy in 10 situations that patients usually encounter (Iannotti et al., 2006). For example, “How sure are you that you can adjust your insulin correctly when you eat more or less than usual?” Participants were asked to rate their confidence on a 10-point scale, which ranges from 0 (not at all sure) to 10 (completely sure). Total self-efficacy scores were calculated by averaging the 10-item scores; higher scores indicated a higher degree of self-efficacy. The
instrument’s original developer provided Cronbach’s alpha of 0.90 and confirmed the questionnaire’s validity as applied to American children and adolescents with type 1 diabetes (Iannotti et al., 2006). In our study, Cronbach’s alpha for the SEDM was 0.86. CES-DC. This 20-item scale measures mood states experienced during the previous week on a scale that ranges from 0 (not at all) to 3 (a lot). Total scores were calculated by summing item scores; possible scores ranged from 0 to 60. Higher scores indicated a greater level of depression. Cronbach’s alpha for the CES-DC was found to be 0.84 for children and adolescents with psychiatric conditions in the United States (Faulstich, Carey, Ruggiero, Enyart, & Gresham, 1986) and 0.90 for Korean adolescents attending a middle school (Kim & Min, 2006). In our study, Cronbach’s alpha for the CES-DC was 0.89. Diabetes Management Behavior Scale (DMBS). This scale, which comprises 36 items, assesses the frequencies of a broad range of care-related behaviors for diabetes, such as daily prevention behaviors, modification of diabetes care plans, and intervention behaviors over the previous 7 days (Iannotti et al., 2006). Participants were asked to rate frequencies on a scale of 0 (never) to 4 (always). Scores were then transformed into proportions of the maximum score possible. Higher scores indicated greater adherence. The instrument’s original developer provided a Cronbach’s alpha of 0.84 and confirmed the validity of this scale for American children and adolescents with type 1 diabetes (Iannotti et al., 2006). In our study, Cronbach’s alpha was 0.86. Data Collection Data were collected at the diabetes camp after obtaining study approval from the hospital’s institutional review board. The diabetes camp is an annual event organized by the hospital; about 30–40 children attend each year. The researchers offered children the opportunity to participate, explained details of the study, and obtained informed consent from children and parents on the first day of camp. During face-to-face interviews, parents were asked to complete an information sheet on sociodemographic characteristics; the children were asked to complete the remainder of the questionnaire, which took them 30–45 min. Children and parents had no difficulty in completing the questionnaire. Statistical Analysis All statistical analyses were performed using SPSS ver. 18.0 (Chicago, IL, USA). For descriptive analysis, we used frequency with percentage, mean with standard deviation, and median with ranges. We also examined possible and observed score ranges, skewness, kurtosis, and the instru3
Diabetes-Specific Quality of Life of Korean Children ments’ ceiling and floor effects. Ceiling and floor effects for each measurement were evaluated using the percentages of children who obtained the highest or lowest possible score. Ceiling and floor effects were considered to be present if more than 20% of children achieved the highest or lowest possible score, respectively (Holmes & Shea, 1997). Reliability of the instruments was assessed based on internal consistency using Cronbach’s coefficients. Internal consistency was considered reliable for an α coefficient ≥0.7 (Nunnally & Bernstein, 1993). Construct validity was examined by testing hypothetical relationships between measures: the K-PedsQL 3.2 Diabetes Module and demographics, clinical, and psychosocial variables, which included age, gender, duration of diabetes, amount of insulin injected per day, HbA1c, self-efficacy, depression, and diabetes management. We hypothesized (a) a negative correlation between K-PedsQL™ 3.2 Diabetes Module and HbA1c or depression, and (b) a positive correlation between K-PedsQL 3.2 Diabetes Module and self-efficacy or diabetes management. Pearson’s correlation coefficients were used to test relationships. Correlation effect sizes were designated as small (
Diabetes-Specific Quality of Life of Korean Children and Adolescents With Type 1 Diabetes Sunjoo Boo, RN, PhD, Youngmee Ahn, RN, PhD, Ji Eun Lee, MD, PhD, Narae Kang, RN, MS, Heesook Kang, RN, MS, and Min Sohn, RN, PhD Sunjoo Boo, RN, PhD, is an Assistant Professor at the College of Nursing, Ajou University, Suwon, South Korea, Youngmee Ahn, RN, PhD, is a Professor at the Department of Nursing, Inha University, Incheon, South Korea, Ji Eun Lee, MD, PhD, is an Associate Professor at the Department of Pediatrics, Inha University Graduate School of Medicine, and Inha University Hospital, Incheon, South Korea, Narae Kang, RN, MS, is a Doctoral Student at the Department of Nursing, Inha University, Incheon, South Korea, Heesook Kang, RN, MS, is a Nurse at the Department of Pediatrics, Inha University Hospital, Incheon, South Korea, and Min Sohn, RN, PhD, is an Associate Professor at the Department of Nursing, Inha University, Incheon, South Korea.
Search terms: Child, depression, diabetes mellitus, Korean, quality of life Author contact: [email protected], with a copy to the Editor: [email protected] Conflict of interest: There is no conflict of interest.
PURPOSE: The purpose of this study was to explore the quality of life of children in Korea with type 1 diabetes and related factors. METHODS: Children were recruited from a diabetes camp. Data were collected using four instruments: the PedsQL™ 3.2 Diabetes Module, Self-Efficacy for Diabetes Self-Management, the Center for Epidemiological Studies Depression Scale for Children, and the Diabetes Management Behavior Scale. RESULTS: Children who were older (t = 2.197, p = .041), male (t = −3.579, p = .002), and less depressed (t = −2.859, p = .010) were more likely to have better quality of life. CONCLUSION: Further research is needed in children with type 1 diabetes in countries where this disease is rare, and governmental support and public awareness are limited. ࠆˮֹࢳ ˱ࠉقЕࢿкϵձɼऑଞ˲ࢉ߅Ѱঐܕϗࢂкϵઞࢇࢂۓ۽ ओࡶۛଜ̛ࡢଥݤଭѸ߹Ь ࠆˮ،˱ࠉق أձࡢଥкϵ৪߾ॳࠆଞ߅ѰҚࡶоۘࡳԻɼˈؿ۶ח एձࢇࡈଜࠆՎձܹखଜࠑЬࡈیѹѦ˱Е3HGV4/3.2 Diabetes Module, Self-Efficacy for Diabetes Self-Management, the Center for Epidemiological Studies Depression. Scale for Childrenthe Diabetes Management Behavior Scale ձ૦ଡଜࠑЬ ʹ˒ Οࢇɼքˈ(t = 2.197, p = .041)Χ(ֲࢇط۽t = −3.579, p = .002)ࡉࡌଞ ʃࢽࢇࢶࡵ(t = −2.859, p = .010)߅ѰࢊܹԼࢂۓओࢇϩߑЬ ϟࡿ ࢿкϵ؈ۢթࢇά߅ۘоࢶࡳԻࢽٕࢂएࡕ˕оࣸҚࢂࢉࡵࢶࢇݥ ˲ɼձоۘࡳԻଞЬߦଞࠉ˱ɼଗࡁଜЬ
Worldwide, 180 million children and adolescents have type 1 diabetes, and by 2030 its prevalence is estimated to double (World Health Organization, 2011). Type 1 diabetes is one of the most common chronic diseases in children living in Northern Europe and North America (Forlenza & Rewers, 2011). Thus, most studies to date have been conducted in these regions. In Korea, type 1 diabetes is rare, but its incidence among children and adolescents under 15 years old has slowly increased from 1.06 per 100,000 in 1994 (Rhee, 2003) to 1.36 per 100,000 in 2000 (Shin, 2008). Although the incidence and prevalence of type 1 diabetes vary between countries and ethnicities, researchers and clinicians recognize that the disease has a considerable impact on affected
© 2015 NANDA International, Inc. International Journal of Nursing Knowledge Volume ••, No. ••, •• 2015
families and children, regardless of gender, age, or ethnicity (Soltesz, Patterson, & Dahlquist, 2007). Children with type 1 diabetes and their families experience frequent complications, depression, family conflicts, social isolation, and financial distress (de Wit et al., 2008; Stewart, Rao, Emslie, Klein, & White, 2005). Furthermore, children in countries like South Korea, where the incidence of this disease is low, may experience greater difficulties because governmental support and public awareness are lacking (Puri, Sapra, & Jain, 2013). Health-related quality of life (QOL) is an important indicator of individual health, particularly for those with chronic health conditions. However, it has been studied less frequently in children and adolescents than in adults. Nonethe-
1
Diabetes-Specific Quality of Life of Korean Children less, the few studies that have been conducted have noted the value of QOL in the management of diabetes in children. In particular, children with a higher QOL exhibit better glucose control, better growth and development, and fewer diabetes-related complications (Matziou et al., 2011). Furthermore, many clinicians and researchers agree that QOL is a useful indicator in designing more effective treatment regimens and programs and monitoring their effectiveness (Ingerski, Laffel, Drotar, Repaske, & Hood, 2010). QOL for children with type 1 diabetes sometimes appears better than for children with other chronic diseases, such as asthma, cancer, or kidney disorders (Varni, Limbers, & Burwinkle, 2007). However, QOL in some respects is poorer for the former. For example, researchers have found that children with type 1 diabetes experience more emotional dysfunction than children who have asthma, a chronic gastrointestinal disorder like irritable bowel syndrome, an endstage renal disorder, or heart disease (Varni et al., 2007). Furthermore, the QOL of children and adolescents with type 1 diabetes depends on demographics and clinical and psychosocial conditions. Studies of children in Norway (Frøisland et al., 2013), Greece (Matziou et al., 2011), and the United States (Hilliard et al., 2013) have shown that better QOL is associated with younger age, male gender, a lower HbA1c, a shorter disease duration, and the absence of complications. In addition to demographic and clinical factors, other studies recognized that psychological and behavioral factors are also associated with QOL in children with diabetes. For example, children with lower self-efficacy, more depressive feelings, and deficient ability to manage diabetes have poorer QOL (Abolfotouh, Kamal, El-Bourgy, & Mohamed, 2011; Matziou et al., 2011). These findings highlight the importance of home and school for better QOL in these children. These results are also consistent with previous studies that home and school are where children strengthen their self-efficacy, pursue more positive emotions, and achieve better diabetes management behaviors in the continuity of diabetes care (American Association of Diabetes Educators, 2014). Nevertheless, school nurses and teachers seem less aware of diabetes care, and this circumstance is one of parents’ concerns in diabetes care (Newbould, Francis, & Smith, 2007). In fact, diabetes care, unlike asthma, is still not included as a school nursing in the Nursing Intervention Classification (NIC; Bulechek, Butcher, Dochterman, & Wagner, 2013). Data on the QOL of Korean children with type 1 diabetes are limited. We could find only one such study (Han et al., 2013). In that study, Han et al. (2013) described QOL in Korean children with type 1 diabetes using one of the PedsQL™ diabetes modules and found it to be low in these children. Currently, two versions of PedsQL™ diabetes module are available: the 3.0 version and the 3.2 version. Although these versions are alike in most respects, they were developed for children with chronic and acute diabetic conditions, respectively. However, the researchers who developed these modules recently recommended that the 3.2 version replace the 3.0 version in clinical research 2
S. Boo et al.
and practice for all patients with newly diagnosed, stable, or long-standing diabetes (Varni et al., 2013). Han et al., who used the 3.0 module, found slightly lower Cronbach’s alpha values and weaker correlations with parent proxy responses in some subdomains. In addition, they did not explore factors associated with their participants’ QOL, for example psychosocial factors, which could shed light on how to improve QOL. The present study was undertaken to explore diabetesspecific QOL in Korean children and adolescents with type 1 diabetes using the PedsQL™ 3.2 Diabetes Module. We chose it (Varni et al., 2013) because the instrument uses expressions and meanings that are appropriate to Korea’s language, culture, and clinical environment. In addition, the module has been adapted for use with children who have a wide range of diseases; most of these modules have been tested for validity and reliability in various languages. We also performed psychometric evaluation of the K-PedsQL 3.2 Diabetes Module, including reliability and validity testing. To investigate its validity, we explored associations between the K-PedsQL 3.2 Diabetes Module and demographic, clinical, and psychosocial variables, including selfefficacy, diabetes management behaviors, and depressive mood. Methods Design and Sample This was a cross-sectional descriptive study. Participants were children and adolescents who attended a diabetes camp established by a university hospital in Incheon, South Korea. To be included in the study, individuals had to be aged 8–18 and diagnosed with type 1 diabetes. Age 8 has been recognized to be the minimum age for children to provide self-report data for research purposes (Ravens-Sieberer & Bullinger, 2002). Children were excluded from the study if they had received medical care for diabetes at other hospitals; this step ensured the reliability of clinical information. Researchers approached all children who attended the camp and identified those who met the study’s inclusion criteria. Data were collected from August 1, 2012 to January 31, 2013. Measurements Data on demographics, clinical information, QOL, selfefficacy, depression, and diabetes management were collected. With the exception of demographics and clinical information, measures were originally written in English, and thus required translation into Korean. Permission to use these instruments was obtained from their developers. No permission was required to use the Center for Epidemiological Studies Depression Scale for Children (CES-DC) because it is in the public domain. For components that required translation, forward translation into Korean was initially done by two translators, who then reconciled differences. This version was
S. Boo et al.
Diabetes-Specific Quality of Life of Korean Children
then back-translated into English by an independent bilingual translator with clinical experience as a nurse in the United States and Korea to check for loss of meaning. The original English version was then compared with the back-translated version. Small grammatical changes were made, but no substantial differences in expression and meaning of words were found between the two versions. Demographics and clinical information, such as sex, age, age at diagnosis, duration of diabetes, weight, and height, were obtained during face-to-face interviews with parents. Recent HbA1c levels, amount of insulin injected per day, history of diabetes-related complications, and hospital admissions were extracted from each participant’s medical record. PedsQL™ 3.2 Diabetes Module. The PedsQL™ 3.2 Diabetes Module has two age-specific versions for children and adolescents, 8–12 years and 13–18 years, respectively. We used the 8- to 12-year-old version of the 3.2 module to all study participants to allow comparisons to be made between children and adolescents in statistical analysis. Only one difference existed between versions of two age groups. The 13- to 18-year-old version has one more question, “I worry about the long-term complications of diabetes.” The 3.2 module for children aged 8–12 comprises 32 items in five subscales: diabetes symptoms (15 items), treatment barriers (5 items), treatment adherence (6 items), worry (2 items), and communication (4 items). A 5-point Likert scale was used, which ranges from 0 (never a problem) to 4 (almost always a problem). Items were reversely scored and linearly transformed to a range of 0–100. Total scores were calculated by averaging item scores. Higher scores indicated better diabetes-specific QOL and fewer diabetic symptoms or problems. Self-Efficacy for Diabetes Self-Management (SEDM). Self-efficacy is based on social cognitive theory. Bandura (1986) defined self-efficacy as an individual’s judgment of his/her ability to perform actions required to attain target goals. Because children and adolescents with type 1 diabetes must manage their disease and maintain healthy behaviors throughout life, they must achieve a high level of self-efficacy. In fact, self-efficacy has been shown to be positively associated with diabetes management and glucose control in adolescents with type 1 diabetes (Iannotti et al., 2006). The 10-item SEDM questionnaire measures self-efficacy in 10 situations that patients usually encounter (Iannotti et al., 2006). For example, “How sure are you that you can adjust your insulin correctly when you eat more or less than usual?” Participants were asked to rate their confidence on a 10-point scale, which ranges from 0 (not at all sure) to 10 (completely sure). Total self-efficacy scores were calculated by averaging the 10-item scores; higher scores indicated a higher degree of self-efficacy. The
instrument’s original developer provided Cronbach’s alpha of 0.90 and confirmed the questionnaire’s validity as applied to American children and adolescents with type 1 diabetes (Iannotti et al., 2006). In our study, Cronbach’s alpha for the SEDM was 0.86. CES-DC. This 20-item scale measures mood states experienced during the previous week on a scale that ranges from 0 (not at all) to 3 (a lot). Total scores were calculated by summing item scores; possible scores ranged from 0 to 60. Higher scores indicated a greater level of depression. Cronbach’s alpha for the CES-DC was found to be 0.84 for children and adolescents with psychiatric conditions in the United States (Faulstich, Carey, Ruggiero, Enyart, & Gresham, 1986) and 0.90 for Korean adolescents attending a middle school (Kim & Min, 2006). In our study, Cronbach’s alpha for the CES-DC was 0.89. Diabetes Management Behavior Scale (DMBS). This scale, which comprises 36 items, assesses the frequencies of a broad range of care-related behaviors for diabetes, such as daily prevention behaviors, modification of diabetes care plans, and intervention behaviors over the previous 7 days (Iannotti et al., 2006). Participants were asked to rate frequencies on a scale of 0 (never) to 4 (always). Scores were then transformed into proportions of the maximum score possible. Higher scores indicated greater adherence. The instrument’s original developer provided a Cronbach’s alpha of 0.84 and confirmed the validity of this scale for American children and adolescents with type 1 diabetes (Iannotti et al., 2006). In our study, Cronbach’s alpha was 0.86. Data Collection Data were collected at the diabetes camp after obtaining study approval from the hospital’s institutional review board. The diabetes camp is an annual event organized by the hospital; about 30–40 children attend each year. The researchers offered children the opportunity to participate, explained details of the study, and obtained informed consent from children and parents on the first day of camp. During face-to-face interviews, parents were asked to complete an information sheet on sociodemographic characteristics; the children were asked to complete the remainder of the questionnaire, which took them 30–45 min. Children and parents had no difficulty in completing the questionnaire. Statistical Analysis All statistical analyses were performed using SPSS ver. 18.0 (Chicago, IL, USA). For descriptive analysis, we used frequency with percentage, mean with standard deviation, and median with ranges. We also examined possible and observed score ranges, skewness, kurtosis, and the instru3
Diabetes-Specific Quality of Life of Korean Children ments’ ceiling and floor effects. Ceiling and floor effects for each measurement were evaluated using the percentages of children who obtained the highest or lowest possible score. Ceiling and floor effects were considered to be present if more than 20% of children achieved the highest or lowest possible score, respectively (Holmes & Shea, 1997). Reliability of the instruments was assessed based on internal consistency using Cronbach’s coefficients. Internal consistency was considered reliable for an α coefficient ≥0.7 (Nunnally & Bernstein, 1993). Construct validity was examined by testing hypothetical relationships between measures: the K-PedsQL 3.2 Diabetes Module and demographics, clinical, and psychosocial variables, which included age, gender, duration of diabetes, amount of insulin injected per day, HbA1c, self-efficacy, depression, and diabetes management. We hypothesized (a) a negative correlation between K-PedsQL™ 3.2 Diabetes Module and HbA1c or depression, and (b) a positive correlation between K-PedsQL 3.2 Diabetes Module and self-efficacy or diabetes management. Pearson’s correlation coefficients were used to test relationships. Correlation effect sizes were designated as small (
