Goal Disturbance and Coping in Children with Type I Diabetes Mellitus:
Relationships with Health-Related Quality of Life and A1C
Annika van Bussel MSca,b, Anke Nieuwesteeg MSca,b, Eef Janssen MSca,b, Hedwig van Bakel PhDa,
Bea van den Bergh PhDa, Nienke Maas-van Schaaijk PhDc, Roelof Odink MDd, Kathinka Rijk PhDa,
Esther Hartman PhDa,b,*
aDevelopmental Psychology, Tilburg University, Tilburg, The Netherlands
bCenter of Research on Psychology in Somatic diseases (CoRPS), Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands
cDepartment of Medical Psychology, Catharina Hospital, Eindhoven, The Netherlands
dKidz&Ko, Collaboration between 7 pediatric diabetes clinics in the southern part of the Netherlands
a r t i c l e i n f o
Received 11 July 2012
Received in revised form
18 February 2013
Accepted 21 February 2013
health-related quality of life
type 1 diabetes mellitus
Mots clés :
valeur de l’HbA1c
perturbation des objectifs
qualité de vie liée à la santé
diabète sucré de type 1
a b s t r a c t
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 charac-
teristics 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 (d¼?0.58). 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.
? 2013 Canadian Diabetes Association
r é s u m é
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 éval-
uaient 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 (d¼?0,48), 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: firstname.lastname@example.org (E. Hartman).
Contents lists available at SciVerse ScienceDirect
Canadian Journal of Diabetes
1499-2671/$ e see front matter ? 2013 Canadian Diabetes Association
Can J Diabetes 37 (2013) 169e174
l’évitement des stratégies d’adaptation (r ¼ 0,31) et la réaction émotionnelle (r ¼ 0,32) ont été pos-
itivement 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.
? 2013 Canadian Diabetes Association
Childrenwith 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 prob-
lems (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 hemo-
globin (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 varia-
tion 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 indi-
cates that goal attainment is part of one’s HRQoL. Various studies
have shown that goal attainment positively affects subjective well-
being (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 eval-
uated 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 adap-
tive 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 chil-
dren (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.
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.
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 question-
naires 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.
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
A. van Bussel et al. / Can J Diabetes 37 (2013) 169e174
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 studyalpha¼0.68, e.g. having lowenergy),
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 reli-
ability 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 equip-
ment 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 question-
naire 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 question-
naire 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). Twenty-
nine 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”), cognitive-
palliative (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 toa 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).
A1C values reflects average blood glucose levels over the
previous 2 to 3 months. Atarget 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, treat-
ment regime and number of insulin injections per day.
The Statistical Package for the Social Sciences (SPSS, version
17.0) was used to conduct the statistical analyses. Results were
considered significant when p?0.05. 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.
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)¼?2.95; p?0.01; d¼?0.45),
which was specifically due to the significantly lower scores
on the subscale emotional functioning, with a large difference
(t(42)¼?3.66; p?0.001; d¼?0.56). 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;
p?0.001; d¼?0.60). Only 9 of 43 (21%) children in the present
study were optimally controlled.
Demographic and clinical characteristics of children with type 1 diabetes
Characteristics Children with type 1 diabetes (n¼43)
Mean (SD)Range n (%)
Age (y) range
Disease duration (y)
Number of injections per day*
* Three missing values of the number of insulin injections.
A. van Bussel et al. / Can J Diabetes 37 (2013) 169e174
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 (r¼?0.49; p?0.01),
which indicates that goal disturbance was associated with lower
physical HRQoL. Goal disturbance (r¼?0.56; p?0.01) and the
coping strategies avoidance (r¼?0.53; p?0.01) and emotional
reaction (r¼?0.65; p?0.01) were negatively associated with
psychosocial HRQoL. The coping strategies avoidance (r¼?0.39;
p?0.01), emotional reaction (r¼?0.47; p?0.01) and wishful
thinking (r¼?0.45; p?0.01) were negatively associated with dia-
betes impact. The coping strategy acceptance (r¼0.36; p?0.05) was
positively associated with diabetes treatment, whereas the coping
strategies avoidance (r¼?0.33; p?0.05) and emotional reaction
(r¼?0.54; p?0.01) were negatively associated. Finally, we found
a positive relation between the coping strategies avoidance
(r¼0.31; p?0.05), emotional reaction (r¼0.32; p?0.05) and A1C
The aim of the present study was to provide a better under-
standing of relationships among goal disturbance, coping behav-
iour, 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) maybe due toinsufficient power. However, with a powerof
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 proba-
bilityof 95%). With our sample, the ability toidentifysmaller 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
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 resultof poordeveloped healthcareservices. 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
childrenwith pump therapy. However, the current studyconsists of
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 Children with type 1 diabetes (n¼43)
Healthy reference*group (n¼219)
d Differencet value
A1C value (%)
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.
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.
* p < 0.05.
yp < 0.01.
A. van Bussel et al. / Can J Diabetes 37 (2013) 169e174
62.8% patients with pump therapy and is therefore also no expla-
nation. 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 theirdiabetes management (37) thanyounger 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 from7.8% 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 explana-
tion 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. ¼8.7% and Al-Akour
et al. 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. ¼7.8% to 8.3%, Hilliard et al. 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 topoor HRQoL. Therefore, healthcare providers (along with the
child and his/her family) should set some easilyachievable 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 dia-
betes 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. There-
fore, we recommend future research with a larger sample size and
a longitudinal study design to disentangle the complex relation-
ships between goal disturbance, coping behaviour, HRQoL and
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 non-
responding 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 exam-
ining 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. Psycho-
social research in schoolchildren (8 to 12 years) with type 1 dia-
betes is scarce. Most studies focused on patients with type 2
diabetes mellitus (49) or adolescents/adults with type 1 diabetes
The results of this study reveal important recommendations for
treatment. Besides healthcare providers should be aware of diffi-
culties 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 addi-
tion 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.
Both generic and diabetes-specific HRQoL and A1C values of
children with type 1 diabetes were associated with coping behav-
iour 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
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.
A. van Bussel et al. / Can J Diabetes 37 (2013) 169e174
Author Disclosures Download full-text
The authors declare that they have no conflict of interest.
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:
10. WHOQOL. The World Health Organization Quality of Life assessment (WHO-
QOL): position paper from the World Health Organization. Soc Sci Med 1995;
11. Schroevers M, Kraaij V, Garnefski N. How do cancer patients manage unat-
tainable personal goals and regulate their emotions? Br J Health Psychol 2008;
12. Wrosch C, Scheier MF. Personality and quality of life: the importance of opti-
mism 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
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:
17. Maes S, Leventhal H, De Ridder DTD. Coping with chronic disease. In:
Zeidner M, Endler NS, editors. Handbook of coping. Theory, research, appli-
cations. 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 inter-
nalizing 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, psycholog-
ical, 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
quality of life in children and adolescents. Health Qual Life Outcomes 2005;3:70,
27. Garnefski N, Schroevers M, Kraaij V. Lijst Doelbelemmeringen Adolescenten.
Universiteit Leiden: Internal Publication; 2007.
28. 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/.
29. Cohen J. Statistical Power Analysis for the Behavioral Sciences. Hillsdale, NJ:
Lawrence Erlbaum Associates; 1988.
30. 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.
31. 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.
32. 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.
33. 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.
34. 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;
35. Emmanouilidou E, Galli-Tsinopoulou A, Karavatos A, et al. Quality of life of
children and adolescents with diabetes of Northern Greek origin. Hippokratia
36. 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.
37. Dunger DB. Diabetes in puberty. Arch Dis Child 1992;67:569e70.
38. de Wit M, Delemarre-van de Waal HA, Bokma JA, et al. Self-report and parent-
report 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,
39. 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
40. Al-Akour N, Khader YS, Shatnawi NJ. Quality of life and associated factors
among Jordanian adolescents with type 1 diabetes mellitus. J Diabetes
41. 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.
42. 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;
43. 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.
44. 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
45. 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:
46. 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
47. de Wit M, Delemarre-van de Waal HA, Bokma JA, et al. Monitoring and dis-
cussing health-related quality of life in adolescents with type 1 diabetes
improve psychosocial well-being: a randomized controlled trial. Diabetes Care
48. 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.
49. Redekop WK, Koopmanschap MA, Stolk RP, et al. Health-related quality of life
and treatment satisfaction in dutch patients with type 2 diabetes. Diabetes
A. van Bussel et al. / Can J Diabetes 37 (2013) 169e174