Goal Disturbance and Coping in Children with Type I Diabetes Mellitus: Relationships with Health-Related Quality of Life and A1C

Can J Diabetes 37 (2013) 169e174

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Canadian Journal of Diabetes journal homepage: www.canadianjournalofdiabetes.com

Original Research

Goal Disturbance and Coping in Children with Type I Diabetes Mellitus: Relationships with Health-Related Quality of Life and A1C Annika van Bussel MSc a, b, Anke Nieuwesteeg MSc a, b, Eef Janssen MSc a, b, Hedwig van Bakel PhD a, Bea van den Bergh PhD a, Nienke Maas-van Schaaijk PhD c, Roelof Odink MD d, Kathinka Rijk PhD a, Esther Hartman PhD a, b, * a

Developmental Psychology, Tilburg University, Tilburg, The Netherlands Center of Research on Psychology in Somatic diseases (CoRPS), Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands c Department of Medical Psychology, Catharina Hospital, Eindhoven, The Netherlands d Kidz&Ko, Collaboration between 7 pediatric diabetes clinics in the southern part of the Netherlands b

a r t i c l e i n f o

a b s t r a c t

Article history: Received 11 July 2012 Received in revised form 18 February 2013 Accepted 21 February 2013

Objective: Our first objective was to compare the health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (8e12 years) with that of a healthy reference group, and to compare glycated hemoglobin (A1C) values of these children to recommended guidelines. Our second objective was to examine how goal disturbance and coping behaviour were related to HRQoL and A1C. Method: Forty-three children, 8e12 years of age, completed a set of questionnaires that assessed generic and diabetes-specific HRQoL, goal disturbance and coping behaviour. Demographic and clinical characteristics were extracted from medical records. Results: Children with type 1 diabetes reported lower psychosocial HRQoL than healthy references (d¼ 0.48), especially on emotional functioning (d¼0.58). Goal disturbance was associated with lower generic HRQoL. Furthermore, the coping strategies avoidance, emotional reaction and wishful thinking were negatively associated with lower generic and disease-specific HRQoL (r ranged from 0.33 to 0.65), whereas acceptance was positively associated with disease-specific HRQoL (r¼0.36). The average A1C was with 8.1% significantly above the recommended guidelines of 7.5%. Moreover, the coping strategies avoidance (r¼0.31) and emotional reaction (r¼0.32) were positively associated with higher blood glucose levels. Conclusions: The psychosocial HRQoL of children with type 1 diabetes was affected, which was directly associated with the inability to reach personal goals (goal disturbance). An accepting coping strategy might solve these HRQoL problems and additionally improve A1C values. Ó 2013 Canadian Diabetes Association

Keywords: A1C value children coping behaviour goal disturbance health-related quality of life type 1 diabetes mellitus

r é s u m é Mots clés : valeur de l’HbA1c enfants comportement d’adaptation perturbation des objectifs qualité de vie liée à la santé diabète sucré de type 1

Objectif : Notre premier objectif était de comparer la qualité de vie liée à la santé (QVLS) d’enfants ayant le diabète sucré de type 1 (de 8 à 12 ans) aux enfants en santé du groupe de référence et de comparer les valeurs de l’hémoglobine glyquée (HbA1C) de ces enfants aux lignes directrices recommandées. Notre second objectif était d’examiner comment la perturbation des objectifs et le comportement d’adaptation étaient liés à la QVLS et à l’HbA1C. Méthodes : Quarante-trois (43) enfants de 8 à 12 ans ont rempli une série de questionnaires qui évaluaient la QVLS générique et spécifique au diabète, la perturbation des objectifs et le comportement d’adaptation. Les caractéristiques démographiques et cliniques ont été extraites des dossiers médicaux. Résultats : Les enfants ayant le diabète de type 1 ont rapporté une plus faible QVLS psychosociale que les enfants en santé (d¼0,48), particulièrement en ce qui concerne l’adaptation affective (d ¼ 0,58). La perturbation des objectifs a été associée à une plus faible QVLS générique. De plus, l’évitement des stratégies d’adaptation, la réaction émotionnelle et le fait de prendre ses désirs pour des réalités ont été négativement associés à de plus faibles QVLS générique et spécifique à la maladie (r de 0,33 à 0,65), alors que l’acceptation a été positivement associée à la QVLS spécifique à la maladie (r¼0,36). L’HbA1c a été de 8,1 %, soit significativement au-dessus des 7,5 % recommandés par les lignes directrices. De plus,

* Address for correspondence: Esther E. Hartman, Developmental Psychology/ Tilburg University, Room P 707, PO Box 90153, 5000 LE Tilburg, The Netherlands. E-mail address: [email protected] (E. Hartman). 1499-2671/$ e see front matter Ó 2013 Canadian Diabetes Association http://dx.doi.org/10.1016/j.jcjd.2013.02.058

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l’évitement des stratégies d’adaptation (r ¼ 0,31) et la réaction émotionnelle (r ¼ 0,32) ont été positivement associés à des taux de glycémie plus élevés. Conclusions : La QVLS psychosociale des enfants ayant le diabète de type 1 a été affectée, laquelle a été directement associée à l’incapacité d’atteindre les objectifs personnels (perturbation des objectifs). L’acceptation d’une stratégie d’adaptation pourrait résoudre ces problèmes de QVLS et de plus améliorer les valeurs de l’HbA1c. Ó 2013 Canadian Diabetes Association

Introduction Children with type 1 diabetes mellitus have to cope with diverse short- and long-term health consequences. To delay the onset and progression of these health consequences, dealing with a complex and demanding daily treatment regimen is required (1). The health consequences combined with the impact of the treatment regimen could interfere with reaching normal developmental goals in childhood, such as playing with friends and practising sports (2), and may affect the health-related quality of life (HRQoL) (3). Several reviews have studied (aspects of) HRQoL of children with type 1 diabetes. A recent review (4), conducted for the years 2000 through May 2012, showed no differences in HRQoL between children/adolescents with type 1 diabetes as compared to healthy controls. Disease-specific problems were certainly present (4). Other previous narrative reviews showed lower HRQoL in children with type 1 diabetes than healthy peers (5e9). However, these reviews were conducted nonsystematically, focused mainly on one part of HRQoL like psychological problems (6), psychosocial problems (7,9) and depression (8), and were conducted more than 10 years ago (5,8,9). Consequently, in line with the results of the review of our research group (4), we hypothesized that children with type 1 diabetes on average will not report lower HRQoL than their healthy peers. However, we do expect that the HRQoL will vary between children, in that some of them will report good HRQoL whereas others will report low HRQoL. For healthcare providers, enhancing HRQoL in children with HRQoL problems is as important as optimizing glycated hemoglobin (A1C) values in children with type 1 diabetes. It is important to gain knowledge about factors that are related to both HRQoL and A1C values of children with type 1 diabetes. The present study focuses on 2 important factors that might contribute to the variation in HRQoL and A1C values. The first factor is the attainment of personal goals of children with type 1 diabetes. The World Health Organization included the attainment of goals in their definition of HRQoL (10), which indicates that goal attainment is part of one’s HRQoL. Various studies have shown that goal attainment positively affects subjective wellbeing (11e13). For patients with a chronic disease, personal goals might be difficult to attain (14,15), which can result in goal disturbance and impaired HRQoL, especially when goals are evaluated as important (16). The second factor that may contribute to the variation in HRQoL of children with type 1 diabetes is the type of coping behaviour used by these children. Coping is defined as anything a person does to manage the impact of a perceived stressor, such as having type 1 diabetes (17). Some children experience difficulties in adequately managing their type 1 diabetes, blaming themselves or frequently worrying about their type 1 diabetes and its consequences, whereas other children have found more adaptive ways to cope with their disease, like accepting type 1 diabetes as an important part of their lives or thinking what steps could be taken to cope with the situation (18). Research has shown that training in adaptive coping behaviour even leads to improvements in well-being in youth with type 1 diabetes (19), indicating that coping is related to HRQoL. Recent studies in young samples found that adaptive coping behaviour is also associated with lower A1C values (20,21).

Therefore, we hypothesize that children with type 1 diabetes who make use of adaptive coping behaviour will have a better HRQoL and a lower A1C value than children with type 1 diabetes who make use of nonadaptive coping behaviour. To our knowledge, this study is among the first that examines relationships between goal disturbance and HRQoL of young children (8e12 years) with type 1 diabetes and is also the first with a focus on the role of coping behaviour, goal disturbance, HRQoL and A1C values. We expect that goal disturbance will be related to impaired HRQoL and that coping behaviour will be related to both HRQoL and A1C. The aim of the present cross-sectional study is to provide a better understanding of relationships among goal disturbance, coping behaviour, HRQoL and A1C values in children with type 1 diabetes. The first objective of the study was to compare the HRQoL of children with type 1 diabetes (8 to 12 years) with that of a healthy reference group and to compare A1C values of children with type 1 diabetes to recommended guidelines (22). The second objective was to examine whether goal disturbance and coping behaviour were related to HRQoL and A1C values. Methods Participants Between January 2009 and April 2009, 25 children with type 1 diabetes and their parents were recruited from 2 hospitals (Catharina Hospital, Eindhoven and St. Elisabeth Hospital, Tilburg) in the Netherlands. Between January 2011 and April 2011, data collection continued that resulted in the recruitment of 18 further children and their parents from 2 other hospitals (Admiraal de Ruyter Hospital, Goes and St. Anna Hospital, Geldrop). Children, aged 8 to 12 years (M¼10.53, SD¼1.62), with a duration of type 1 diabetes for at least 1 year, and who were able to read and write Dutch, were included. Of all children (n¼84) initially identified and approached, 43 children (20 boys, 23 girls) (51%) participated. Procedure The study was approved by the Medical Ethical Review board and in conjunction with the Helsinki Declaration on human research. All children aged 8 to 12 years with type 1 diabetes that were treated in 1 of the 4 participating hospitals were approached for this study. Participants were sent a set of self-report questionnaires and an informed consent form. The average time to fill in the questionnaires was 30 minutes. When filled in, the documents were returned to the hospitals. Data were studied only if the informed consent was filled in. Measures Generic health-related quality of life was assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 child self-report for children from 8 to 12 years of age (23). The 23-item questionnaire measures how much of a problem each item has been during the past month on a 5-point Likert response scale from 0 (never) to 4 (almost always). Items are reverse scored and linearly transformed

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to a 0 to 100 scale (0¼100; 1¼75; 2¼50; 3¼25; 4¼0). Higher scores indicate better health-related HRQoL. The PedsQL encompasses 4 subscales: physical functioning (Cronbach’s alpha in this study alpha¼0.68, e.g. having low energy), emotional functioning (alpha¼0.65, e.g. feeling anxious), social functioning (alpha¼0.66, e.g. being able to do things that other children do) and school functioning (alpha¼0.56, e.g. difficulties in going to school because of problems). Because the Cronbach’s alpha of school functioning was too low, we did not use this subscale to compare with that of reference values. However, for the sake of completeness we used all psychosocial items, including the school items, to form the summary scale “Psychosocial functioning,” computed as the sum of the items on the emotional, social and school functioning subscales. The Cronbach’s alpha coefficient of the psychosocial summary scale (alpha¼0.77) exceeded the reliability criterion for group comparison. In case <50% of the items of a scale were answered, the scale score could not be computed. When >50% of the items of a scale were responded, missing values were replaced by the mean scale score. Reliability and validity of this questionnaire are well-established (23,24). Diabetes-specific quality of life was measured with the diabetes module of DISABKIDS, for children from 8 to 16 years of age (25). This 10-item measure assesses 2 subscales: diabetes impact (alpha¼0.63; e.g. do you worry about your blood glucose levels?), which refers to the emotional and physical impact of the condition, and diabetes treatment (alpha¼0.62; e.g. is it annoying for you to administer insulin injections?), which describes carrying equipment and planning treatment. Items are rated on a 1 (never) to 5 (always) frequency scale. Items are reverse scored and linearly transformed to a 0 to 100 scale. Higher scores indicate better diabetes-specific HRQoL. Scale scores are computed as the sum of the items divided by the number of items answered. Reliability and validity of the DISABKIDS diabetes module questionnaire have, in the literature, proven to be good (26). Goal disturbance was measured with a diabetes-specific Goals questionnaire (Dutch version: Doelen) (27). The Goals questionnaire starts with a general introduction, explaining that children with type 1 diabetes might experience some special problems, for example, that they are not able or allowed to do the things they want to do or that they have to do certain things they did not (always) want to do, due to their diabetes. The questionnaire consists of 6 items, measuring goal disturbance in 6 distinct dimensions: school/homework, at home, with friends, hobbies, sports, something else. Items are rated on 1 (almost never disturbed) to 5 (almost always disturbed) scale. The total goal disturbance across all domains (alpha¼0.64) is computed as the sum of items. The possible range of scores varies between 6 and 30. Higher scores indicate more goal disturbance due to their diabetes. Psychometric properties of the diabetes-specific Goals questionnaire have not yet been established. Coping behaviour was assessed using the Coping with a Disease questionnaire (CODI), for children aged 8 to 18 years (18). Twentynine items are rated on a 1 (never) to 5 (always) scale. The CODI encompasses 6 distinct coping strategies. Scale scores are computed as the sum of the items, divided by the number of items in each scale: acceptance (alpha¼0.81; e.g. “I accept my illness”), avoidance (alpha¼0.69; e.g. “I try to ignore my illness”), cognitivepalliative (alpha¼0.37; e.g. “I think of worse situations”), distance (alpha¼0.58; e.g. “I think my illness is no big deal), emotional reaction (alpha¼0.73; e.g. “I am angry”) and wishful thinking (alpha¼0.72; e.g. “I hope that my illness disappears”). Items are linearly transformed to a 0 to 100 scale. Higher scores indicate more frequent use of a coping strategy. Because the internal consistency of the subscales cognitiveepalliative and distance is too low, these subscales have been deleted. Reliability and validity proved to be good in the literature (18).

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Table 1 Demographic and clinical characteristics of children with type 1 diabetes Characteristics

Children with type 1 diabetes (n¼43) Mean (SD)

Demographic Gender Boy Girl Age (y) range Clinical Disease duration (y) Treatment regime Insulin pump Insulin injections Number of injections per day* *

Range

n (%)

20 (46.50%) 23 (53.50%) 10.53 (1.62)

8e12

4.21 (2.50)

1e10 27 (62.80%) 16 (37.20%)

3.69 (0.75)

2e4

Three missing values of the number of insulin injections.

A1C values reflects average blood glucose levels over the previous 2 to 3 months. A target range of <7.5% is recommended for an optimal A1C value (22). A1C values were locally determined and extracted from medical records. Demographic and clinical characteristics were extracted from medical records and included age, gender, disease duration, treatment regime and number of insulin injections per day. Statistical analyses The Statistical Package for the Social Sciences (SPSS, version 17.0) was used to conduct the statistical analyses. Results were considered significant when p0.05. Reliability analyses were carried out to determine the internal consistency of the subscales of the questionnaires. Descriptive data were presented as mean and standard deviation in continuous variables and in absolute numbers and percentages in discrete variables. One-sample t-tests were used to compare the means of the subscales of the PedsQL to reference values from a Dutch population (aged 8 to 12 years, n¼219), as reported by Engelen et al (28) and to compare A1C values to the recommended guidelines (31). To examine the magnitude of the statistically significant differences, standardized differences, interpreted as effect sizes (d), between mean scores were calculated (d). Effect sizes of 0.20, 0.50 and 0.80 can be considered small, medium and large, respectively (29). Pearson correlations were used to examine the associations between HRQoL, goal disturbance and coping behaviour. Following Cohen (29), correlations of 0.10, 0.30 and 0.50 were considered small, medium and large, respectively. Results Patient characteristics Table 1 presents the demographic and clinical characteristics of the participating children with type 1 diabetes. Comparing children’s HRQoL and A1C values Table 2 shows that children with type 1 diabetes reported significantly lower psychosocial HRQoL than a healthy reference group with a medium difference (t (42)¼2.95; p0.01; d¼0.45), which was specifically due to the significantly lower scores on the subscale emotional functioning, with a large difference (t(42)¼3.66; p0.001; d¼0.56). In the present study, a mean A1C value of 8.1% was measured, which is significantly, and with a large difference, above the recommended guidelines of 7.5%(t(42)¼4.25; p0.001; d¼0.60). Only 9 of 43 (21%) children in the present study were optimally controlled.

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Table 2 Comparisons between generic health-related quality of life (HRQoL) and glycated hemoglobin (A1C) values of children with type 1 diabetes (8 to 12 years) to respectively a healthy reference* group and a recommended guideline Variable

Physical HRQoL Psychosocial HRQoL Emotional functioning Social functioning A1C value (%)

Children with type 1 diabetes (n¼43)

Healthy reference* group (n¼219)

Mean (SD)

Mean (SD)

86.34 75.35 67.44 86.40 8.10

84.87 80.63 77.05 86.14 58.00

(10.70) (11.73) (17.23) (13.42) (0.85)

(9.30) (10.31) (13.66) (12.30)

d

Difference

t value

0.14 0.45 0.056 0.002 0.071

1.47 5.28 9.61 0.26 0.060

0.90 2.95z 3.66x 0.13 4.25x

Following the ISPAD guidelines 2009 (22), optimal A1C was defined as A1C values <58.00 mmol/mol (or <7.5%), suboptimal metabolic control as A1C values 58.00 mmol/mol (or 7.5%). Due to low reliability of the subscale school functioning, we did not compare the mean of the subscale to a reference value. Effect sizes of 0.20, 0.50, and 0.80 can be considered small, medium, and large, respectively (29). * Reference group for Pediatric Quality of Life Inventory (PedsQL) is Dutch children aged 8 to 12 years (n¼219) without a reported chronic condition, as reported by Engelen et al (39). Higher scores correspond to higher HRQoL. The PedsQL scores range from 0 to 100 for all subscales. z p<0.01. x p<0.001.

Associations between the variables Table 3 presents the correlation matrix of HRQoL, A1C values, goal disturbance and coping behaviour. Goal disturbance and physical HRQoL were negatively correlated (r¼0.49; p0.01), which indicates that goal disturbance was associated with lower physical HRQoL. Goal disturbance (r¼0.56; p0.01) and the coping strategies avoidance (r¼0.53; p0.01) and emotional reaction (r¼0.65; p0.01) were negatively associated with psychosocial HRQoL. The coping strategies avoidance (r¼0.39; p0.01), emotional reaction (r¼0.47; p0.01) and wishful thinking (r¼0.45; p0.01) were negatively associated with diabetes impact. The coping strategy acceptance (r¼0.36; p0.05) was positively associated with diabetes treatment, whereas the coping strategies avoidance (r¼0.33; p0.05) and emotional reaction (r¼0.54; p0.01) were negatively associated. Finally, we found a positive relation between the coping strategies avoidance (r¼0.31; p0.05), emotional reaction (r¼0.32; p0.05) and A1C values.

Discussion The aim of the present study was to provide a better understanding of relationships among goal disturbance, coping behaviour, HRQoL and A1C values in children with type 1 diabetes in a cross-sectional study using self-report measures. First, we compared the HRQoL of children aged 8 to 12 years to healthy references, and the A1C levels to recommended guidelines (22). The second objective was to examine whether goal disturbance and coping behaviour were related to HRQoL and A1C values.

From the results, it appeared that, although the physical domain of HRQoL was not impaired, children with type 1 diabetes reported more impaired psychosocial functioning than healthy references, which was mainly due to emotional problems (e.g. feelings of anger). Because of the sample size, we need to be aware of the possibility that the nonsignificant results (physical and social HRQoL) may be due to insufficient power. However, with a power of 0.80 and an alpha level of 0.05, a sample-size of 45 appeared to be sufficient to be able to detect medium effect sizes (with a probability of 95%). With our sample, the ability to identify smaller effects was limited. We conclude that the psychosocial functioning, in particular the emotional functioning, was seriously impaired. Maybe, with a larger sample size more significant but smaller effects would have been found, which would not be clinically meaningful. These findings were not in line with the “overall” result of the review of Nieuwesteeg et al (4), which showed that the generic HRQoL of children with type 1 diabetes was similar to that of healthy peers. As was described, some studies found impaired psychosocial HRQoL (30e33), whereas other studies found that children and adolescents reported similar HRQoL as healthy peers, or even found adaptive outcomes (34e36). The studies of Jafari et al. (30) and Kalyva et al. (31) were executed in Iran and Greece (Crete), respectively, which might explain the low HRQoL levels, as a result of poor developed healthcare services. However, the studies of Nardi et al. (32), Varni et al. (33) and the current study were executed in highly developed countries with adequate healthcare, indicating that quality of healthcare does not explain the varying HRQoL results between studies. An alternative explanation for the low HRQoL in the studies (30e32) could be the low number of children with pump therapy. However, the current study consists of

Table 3 Pearson correlations among generic and diabetes-specific health-related quality of life (HRQoL), glycated hemoglobin (A1C) values, goal disturbance and coping behaviour in children with type 1 diabetes (8 to 12 years of age) (n¼43)

1. 2. 3. 4. 5. 6. 7. 8. 9. 10. * y

p < 0.05. p < 0.01.

Physical HRQoL Psychosocial HRQoL Diabetes impact Diabetes treatment A1C value Goal disturbance Acceptance Avoidance Emotional reaction Wishful thinking

1.

2.

3.

4.

5.

6.

7.

8.

9.

d 0.60* 0.06 0.16 0.08 0.49y 0.01 0.12 0.27 0.05

d 0.29 0.47y 0.26 0.56y 0.29 0.53y 0.65y 0.10

d 0.39y 0.22 0.06 0.28 0.39y 0.47y 0.45y

d 0.35* 0.26 0.36* 0.33* 0.54y 0.23

d 0.15 0.20 0.31* 0.32* 0.14

d 0.01 0.28 0.26 0.13

d 0.39y 0.60y 0.15

d 0.54y 0.37*

d 0.31*

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62.8% patients with pump therapy and is therefore also no explanation. The last possible explanation might be the young age of the children that were included. All the reviewed studies (4) also included children older than 12 years. Maybe the HRQoL of adolescents with type 1 diabetes is comparable to that of healthy reference groups as adolescents might be more habituated to their diabetes treatment and are more independent of their parents with respect to their diabetes management (37) than younger patients as in our sample. The mean A1C value in our sample (8.1%) appeared to be similar as compared to other studies examining HRQoL, with mean A1C values ranging from 7.8% to 8.8%, (31,32,34e36,38,39,41). Therefore, high A1C could also not explain the low HRQoL. When exploring other possible explanations (e.g. heterogeneity in instruments, differences in samples or varying sample sizes), we found no clear patterns and, therefore, another possible explanation of these contrasting findings remains unclear. Surprisingly, HRQoL and A1C values were not interrelated. The patients that were included in studies that did find a relationship between A1C and HRQoL (e.g. Hoey et al. [39]¼8.7% and Al-Akour et al. [40]¼9.4%) had higher A1C levels than the patients that were included in studies that did not find a relationship between A1C and HRQoL (e.g. McMahon et al. [41]¼7.8% to 8.3%, Hilliard et al. [42]¼ 7.5% and our study¼8.1%), indicating that the association between A1C and HRQoL might only be present with suboptimal A1C. The first factor that was examined to contribute to the diversity in HRQoL and A1C of children with type 1 diabetes was the attainment of personal goals. In line with the self-regulation theory (43), it was hypothesized that, for children with type 1 diabetes, personal goals might be difficult to attain, which can result in goal disturbance and impaired HRQoL. From the results, it appeared indeed that psychosocial HRQoL problems were directly related to goal disturbance, probably as a result of the tasks needed to achieve optimal A1C values interfering with the attainment of personal goals (like having fun or playing with friends), which might, in turn, lead to poor HRQoL. Therefore, healthcare providers (along with the child and his/her family) should set some easily achievable personal goals (like an afternoon of crafts) to improve the HRQoL of the child. The second factor that was hypothesized to contribute to the variation in HRQoL of children with type 1 diabetes is the type of coping behaviour that was used by these children. Results showed that children who used an accepting coping strategy reported better diabetes-specific HRQoL whereas nonadaptive coping behaviour, including avoidance, emotional reaction and wishful thinking, were negatively related to (diabetes-specific) HRQoL. In addition, avoidance and emotional reaction were also related to suboptimal A1C values. Studies with adolescents with type 1 diabetes support these findings, as those with more adaptive coping strategies reported better diabetes-related life satisfaction (44) and those with suboptimal coping strategies reported less optimal A1C values (20,21). Hence, the used coping strategy is directly related to both the HRQoL and A1C values of children with type 1 diabetes. Therefore, we recommend that healthcare providers use coping strategies in the treatment of type 1 diabetes, that is to inform themselves about the way children cope with the disease and to change nonadaptive coping strategies toward more accepting attitudes. Based on the stress coping model (17), a framework for a person’s adaptation to chronic illness, we hypothesized that coping behaviour modifies the impact of goal disturbance on HRQoL. However, the low sample size (n¼43) precluded regression analyses with interaction terms to examine moderating effects. Furthermore, the cross-sectional design of the study refrains us from drawing conclusions concerning causality of effects. Therefore, we recommend future research with a larger sample size and a longitudinal study design to disentangle the complex relationships between goal disturbance, coping behaviour, HRQoL and A1C values.

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Including metabolic goal setting in future research would be a valuable addition, because the study of the Hvidoere Study Group on Childhood Diabetes (45) showed that clear and consistent setting of metabolic targets appears to play a significant role in explaining differences in metabolic outcome in adolescents. Metabolic goal setting could be a moderator between the HRQoL and A1C values (45). Furthermore, 51% of the approached patients returned the questionnaire. Due to reasons of confidentiality, it was not possible to examine demographic and clinical characteristics of nonresponding patients, leaving unknown to which extent selection bias may have played a role. An explanation for the relatively low response rate could be that the simultaneous assessment, of another study with questionnaires among children (8 to 12 years) with type 1 diabetes and their parents in the same hospitals at the same time, affected the participation rate. Nevertheless, the participation rate of 51% is comparable with other studies examining HRQoL of 53% (46,47) and 55% (48). Finally, psychometric properties of the Goals questionnaire have not yet been established (in pediatric populations). We recommend future research to analyze reliability and validity of the questionnaire. This study is innovative in that it is the first that included goal disturbance and examined relationships between goal disturbance, coping, HRQoL and A1C of children with type 1 diabetes. Another strong point of the study is the focus on schoolchildren. Psychosocial research in schoolchildren (8 to 12 years) with type 1 diabetes is scarce. Most studies focused on patients with type 2 diabetes mellitus (49) or adolescents/adults with type 1 diabetes (38,39).

Clinical implications The results of this study reveal important recommendations for treatment. Besides healthcare providers should be aware of difficulties in optimizing A1C values, they should be especially alert to psychosocial HRQoL problems of children with type 1 diabetes. Because the results of the present study showed that both HRQoL and A1C values of children are associated with coping behaviour, nonmedical assistance such as coping skills training (in which healthcare providers focus on a child’s coping behaviour, especially enhancing acceptance of the situation) and decrease the use of nonadaptive strategies (like avoidance) would be a valuable addition to the standard medical care. Moreover, healthcare providers could also improve the HRQoL of children with type 1 diabetes by setting easily achievable personal goals in consultation with the child and his/her family.

Conclusion Both generic and diabetes-specific HRQoL and A1C values of children with type 1 diabetes were associated with coping behaviour and goal disturbance. Treatment should be directed to both optimizing A1C values and improving the HRQoL of children with type 1 diabetes, by applying a combination of somatic and psychosocial treatment.

Acknowledgements The study was made possible by cooperation of several staff members of Catharina Hospital in Eindhoven, St. Elisabeth Hospital in Tilburg, Admiraal de Ruyter Hospital in Goes and St. Anna Hospital in Geldrop. We are particularly grateful for the children and their parents who participated in this study.

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Author Disclosures The authors declare that they have no conflict of interest.

27. 28.

References 29. 1. Watkins PJ. ABC of diabetes. 5th ed. London, UK: BMJ Publishing Group; 2002. 2. Grey M, Cameron ME, Lipman TH, et al. Psychosocial status of children with diabetes in the first 2 years after diagnosis. Diabetes Care 1995;18:1330e6. 3. Hart HE, Bilo HJ, Redekop WK, et al. Quality of life of patients with type I diabetes mellitus. Qual Life Res 2003;12:1089e97. 4. Nieuwesteeg A, Pouwer F, van der Kamp R, et al. Quality of life of children with type 1 diabetes: a systematic review. Curr Diabetes Rev 2012;8:434e43. 5. Golden MP. Special problems with children and adolescents with diabetes. Prim Care 1999;26:885e93. 6. Jaser SS. Psychological problems in adolescents with diabetes. Adolesc Med State Art Rev 2010;21:138e51, xexi. 7. Kakleas K, Kandyla B, Karayianni C, Karavanaki K. Psychosocial problems in adolescents with type 1 diabetes mellitus. Diabetes Metab 2009;35:339e50. 8. Kanner S, Hamrin V, Grey M. Depression in adolescents with diabetes. J Child Adolesc Psychiatr Nurs 2003;16:15e24. 9. Schiffrin A. Psychosocial issues in pediatric diabetes. Curr Diab Rep 2001;1: 33e40. 10. WHOQOL. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41:1403e9. 11. Schroevers M, Kraaij V, Garnefski N. How do cancer patients manage unattainable personal goals and regulate their emotions? Br J Health Psychol 2008; 13:551e62. 12. Wrosch C, Scheier MF. Personality and quality of life: the importance of optimism and goal adjustment. Qual Life Res 2003;12:59e72. 13. Wrosch C, Scheier MF, Miller GE, et al. Adaptive self-regulation of unattainable goals: goal disengagement, goal reengagement, and subjective well-being. Pers Soc Psychol Bull 2003;29:1494e508. 14. Boersma SN, Maes S, Joekes K. Goal disturbance in relation to anxiety, depression, and health-related quality of life after myocardial infarction. Qual Life Res 2005;14:2265e75. 15. van der Veek SM, Kraaij V, Van Koppen W, et al. Goal disturbance, cognitive coping and psychological distress in HIV-infected persons. J Health Psychol 2007;12:225e30. 16. Kuijer RG, de Ridder DTD. Discrepancy in illness-related goals and quality of life in chronically ill patients: the role of self-efficacy. Psychol Health 2003;18: 313e30. 17. Maes S, Leventhal H, De Ridder DTD. Coping with chronic disease. In: Zeidner M, Endler NS, editors. Handbook of coping. Theory, research, applications. New York, NY: Wiley; 1996. p. 221e51. 18. Petersen C, Schmidt S, Bullinger M. Brief report: development and pilot testing of a coping questionnaire for children and adolescents with chronic health conditions. J Pediatr Psychol 2004;29:635e40. 19. Grey M, Boland EA, Davidson M, et al. Coping skills training for youth with diabetes mellitus has long-lasting effects on metabolic control and quality of life. J Pediatr 2000;137:107e13. 20. Luyckx K, Seiffge-Krenke I, Hampson SE. Glycemic control, coping, and internalizing and externalizing symptoms in adolescents with type 1 diabetes: a cross-lagged longitudinal approach. Diabetes Care 2010;33:1424e9. 21. Luyckx K, Vanhalst J, Seiffge-Krenke I, et al. A typology of coping with type 1 diabetes in emerging adulthood: associations with demographic, psychological, and clinical parameters. J Behav Med 2010;33:228e38. 22. Rewers M, Pihoker C, Donaghue K, et al. ISPAD clinical consensus guidelines 2009 compendium. Assessment and monitoring of glycemic control in children and adolescents with diabetes. Pediatr Diabetes 2009;10:71e81. 23. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999;37:126e39. 24. Varni JW, Burwinkle TM, Jacobs JR, et al. 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 2003;26:631e7. 25. Schmidt S. The DISABKIDS questionnaires: questionnaires for children with chronic conditions. Lengerich: Past Science Publishers; 2006. 26. Baars RM, Atherton CI, Koopman HM, et al. The European DISABKIDS project: development of seven condition-specific modules to measure health related

30.

31.

32.

33.

34.

35.

36.

37. 38.

39.

40.

41.

42.

43.

44.

45.

46.

47.

48.

49.

quality of life in children and adolescents. Health Qual Life Outcomes 2005;3:70, http://www.hqlo.com/content/3/1/70. Garnefski N, Schroevers M, Kraaij V. Lijst Doelbelemmeringen Adolescenten. Universiteit Leiden: Internal Publication; 2007. Engelen V, Haentjesn MM, Detmar SB, et al. Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands. BMC Pediatr 2009;9:68, http://www.biomedcentral.com/1471-2431/9/68/. Cohen J. Statistical Power Analysis for the Behavioral Sciences. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988. Jafari P, Forouzandeh E, Bagheri Z, et al. 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 2011;9:104, http://www.hqlo.com/content/9/1/104. Kalyva E, Malakonaki E, Eiser C, et al. Health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (T1DM): self and parental perceptions. Pediatr Diabetes 2011;12:34e40. Nardi L, Zucchini S, D’Alberton F, et al. Quality of life, psychological adjustment and metabolic control in youths with type 1 diabetes: a study with self- and parent-report questionnaires. Pediatr Diabetes 2008;9:496e503. Varni JW, Limbers CA, Burwinkle TM, et al. The ePedsQL in type 1 and type 2 diabetes: feasibility, reliability and validity of the Pediatric Quality of Life Inventory Internet administration. Diabetes Care 2008;31:672e7. Wagner VM, Muller-Godeffroy E, von Sengbusch S, et al. Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with type 1 diabetes mellitus. Eur J Pediatr 2005; 164:491e6. Emmanouilidou E, Galli-Tsinopoulou A, Karavatos A, et al. Quality of life of children and adolescents with diabetes of Northern Greek origin. Hippokratia 2008;12:168e75. Nakamura N, Sasaki N, Kida K, et al. Health-related and diabetes-related quality of life in Japanese children and adolescents with type 1 and type 2 diabetes. Pediatr Int 2010;52:224e9. Dunger DB. Diabetes in puberty. Arch Dis Child 1992;67:569e70. de Wit M, Delemarre-van de Waal HA, Bokma JA, et al. Self-report and parentreport of physical and psychosocial well-being in Dutch adolescents with type 1 diabetes in relation to glycemic control. Health Qual Life Outcomes 2007;5:10, http://www.hqlo.com/content/5/1/10. Hoey H, Aanstoot HJ, Chiarelli F, et al. Good metabolic control is associated with better quality of life in 2,101 adolescents with type 1 diabetes. Diabetes Care 2001;24:1923e8. Al-Akour N, Khader YS, Shatnawi NJ. Quality of life and associated factors among Jordanian adolescents with type 1 diabetes mellitus. J Diabetes Complications 2010;24:43e7. McMahon SK, Airey FL, Marangou DA, et al. Insulin pump therapy in children and adolescents: improvements in key parameters of diabetes management including quality of life. Diabet Med 2005;22:92e6. Hilliard ME, Goeke-Morey M, Cogen FR, et al. Predictors of diabetes-related quality of life after transitioning to the insulin pump. J Pediatr Psychol 2009; 34:137e46. Carver CS, Scheier MF. Stress, coping and self-regulatory processes. In: Pervin LA, John OP, editors. Handbook of personality. 2nd ed. New York, NY: Guilford Press; 1999. p. 553e75. Graue M, Wentzel-Larsen T, Bru E, et al. The coping styles of adolescents with type 1 diabetes are associated with degree of metabolic control. Diabetes Care 2004;27:1313e7. Swift PG, Skinner TC, de Beaufort CE, et al. Target setting in intensive insulin management is associated with metabolic control: the Hvidoere childhood diabetes study group centre differences study 2005. Pediatr Diabetes 2010;11: 271e8. Solli O, Stavem K, Kristiansen IS. Health-related quality of life in diabetes: the associations of complications with EQ-5D scores. Health Qual Life Outcomes 2010;8:18. de Wit M, Delemarre-van de Waal HA, Bokma JA, et al. Monitoring and discussing health-related quality of life in adolescents with type 1 diabetes improve psychosocial well-being: a randomized controlled trial. Diabetes Care 2008;31:1521e6, http://www.hqlo.com/content/8/1/18. Undén AL, Elofsson S, Andréasson A, et al. Gender differences in self-rated health, quality of life, quality of care, and metabolic control in patients with diabetes. Gend Med 2008;5:162e80. Redekop WK, Koopmanschap MA, Stolk RP, et al. Health-related quality of life and treatment satisfaction in dutch patients with type 2 diabetes. Diabetes Care 2002;25:458e63.