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Management & monitoring of paediatric end-stage renal disease
Schoenmaker, N.J.
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Schoenmaker, N. J. (2013). Management & monitoring of paediatric end-stage renal disease
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Download date: 16 Jun 2017
Children from non-Western origin
6
Non-Western immigrant children with End-stage
renal disease in the Netherlands, Belgium and a
part of Germany have impaired health related
quality of life compared to Western children
Nikki J. Schoenmaker1, Lotte Haverman2, Wilma F.Tromp1, Johanna H. van
der Lee3, Martin Offringa4, Brigitte Adams5, Antonia H. M. Bouts1, Laure
Collard6, Karlien Cransberg7, Maria van Dyck8, Nathalie Godefroid9, Koenraad
van Hoeck10, Linda Koster-Kamphuis11, Marc R. Lilien12, Ann Raes13, Christina
Taylan14, M.A. Grootenhuis2 and J.W. Groothoff1
Departments of Paediatric Nephrology: 1Emma Children’s Hospital Academic Medical Centre
Amsterdam, the Netherlands, 5Hospital Universitaire des Enfants Reine Fabiola Brussels,
Belgium, 6Centre Hospitalier Universitaire de Liege, Belgium, 7Sophia Children’s Hospital
Erasmus MC Rotterdam, the Netherlands, 8University Hospitals Leuven, Belgium, 9University
Centre Louvain, Brussels, 10University Hospital Antwerp, Belgium, 11Radboud University
Nijmegen Medical Centre, the Netherlands, 12Wilhelmina Children’s Hospital University
Medical Centre Utrecht, the Netherlands, 13University Hospital Gent, Belgium, 14University
Hospital Cologne, Germany
Psychosocial Department, Emma Children’s Hospital AMC, Amsterdam, the Netherlands
Clinical Research Unit, Division Woman-Child, Academic Medical Centre Amsterdam, the
Netherlands 4Child Health Evaluative Sciences (CHES), Hospital for Sick Children, University of
Toronto, Canada
Submitted
2
3
87
6
Chapter 6
Abstract
Background
Many children with end-stage renal disease (ESRD) in Western Europe are from non-Western
European origin. They have unfavorable somatic outcomes compared to Western ESRD children. In this study we compared the Health Related Quality of Life (HRQoL) of both groups.
Methods
All children (5-18 years) with ESRD included in the RICH-Q project (Renal Insufficiency therapy in Children-Quality assessment and improvement) or their parents were asked to complete the generic version of the Paediatric Quality of Life Inventory 4.0 (PedsQL). RICH-Q
comprises the Netherlands, Belgium and a part of Germany. Children were considered to be
non-Western if they or at least one parent was born outside Western-European countries.
Impaired HRQoL for Western and non-Western children with ESRD was defined as a PedsQL
score <5th percentile for healthy Dutch Western and non-Western children, respectively.
Results
Of the 259 eligible children, 230 agreed to participate. 174 children responded, 32% were
of non-Western origin. Overall, 56% of the non-Western children and 49% of the Western
children with ESRD had an impaired total HRQoL score. Total HRQoL scores of Westerns and
non-Westerns with ESRD were comparable, but scores on emotional functioning and school
functioning were lower in non-Western children (p=0.004 and p=0.01, respectively). The
adjusted odds ratios [95% confidence interval] for non-Western children to have impaired
emotional functioning and school functioning were 3.3 [1.5-7.1] and 2.2 [1.1-4.2], respectively.
Conclusion
Children with ESRD of non-Western origin were found to be particularly at risk for impaired
HRQoL on emotional and school functioning in 3 Western countries. These children warrant
special attention.
88
Children from non-Western origin
Introduction
In the Netherlands and Belgium up to 40% of the children on chronic dialysis are children
from parents of non-Western European origin 1. In the Netherlands, the proportion of nonWestern immigrants has increased from 9 to 11% of the total population in the last decade,
which implies an expansion of this group with more than 0.5 million people on a total population of 16.6 million people 2. Therefore, the interest in the specific needs of and care for
this group is rising. Recent data from the Dutch and Belgian collaborative RICH-Q project
(Renal Insufficiency therapy in CHildren-Quality assessment and improvement) showed that
non-Western children with end-stage renal disease (ESRD) were less often transplanted preemptively and had a higher rejection risk after transplantation than Western Dutch and Belgian children 3. Similar unfavourable outcomes were found in a comparison of non-Western
and Western Dutch and Belgian children on dialysis 1.
So far, it is not known whether these disparities in treatment characteristics and health
outcomes lead to poorer Health Related Quality of Life (HRQoL) in non-Western children.
HRQoL is considered as an essential health outcome measure in clinical trials and health services research and evaluation 4;5. Previous studies indicate that, in general, HRQoL is low in
children with ESRD compared to healthy children 6;7. Various factors related to the treatment
of this serious condition, might contribute to this impaired HRQoL. For example, the time
spent on dialysis and during hospital visits and admissions may cause considerable disruption of normal social activities and school attendance 8. This disruption appears to have a
lasting impact as children grow up, since adult survivors of paediatric ESRD report relatively
low self-esteem, two third do not live independently and one third are unemployed 9-11.
For first and second generation non-Western immigrants, who generally live in less favourable circumstances, the burden of ESRD may add up to those caused by their social economic status. We hypothesized that non-Western children with ESRD have a lower HRQoL
compared to Western children with ESRD because of these disadvantages.
We studied the HRQoL of all children (5-18 years) with ESRD within the RICH-Q project,
which comprises all RRT centres for children in the Netherlands and Belgium and a geographically adjacent part of Germany. We compared the HRQoL between non-Western and
Western children with ESRD after standardization based on HRQoL data retrieved in healthy
non-Western and Western children .
Patients and methods
This international HRQoL study was designed as a cross sectional study within the RICH-Q
project (Renal Insufficiency therapy in Children -Quality assessment and improvement) 12. In
RICH-Q anonymous data on treatment characteristics and physical and psychosocial health
outcomes are registered prospectively concerning all children with ESRD treated in the 11
RICH-Q associated hospitals. In the RICH-Q registry we included all prevalent Dutch and
Belgian patients aged <19 years on chronic dialysis on October 1st 2007, and all Dutch and
Belgian patients aged <19 years who started dialysis or were transplanted from October 1st,
2007 to September 2012. Since 2011, all prevalent dialysis and all incident ESRD patients in
a geographically adjacent part of Germany treated in the centre of Cologne aged <19 years
are included in the database.
We obtained ethical approval from the ethics boards of all participating hospitals and written Informed Consent from all parents of all participants. Children or their parents who
89
6
Chapter 6
completed the PedsQL are called ‘participants’, and children or parents who either did not
give informed consent or did not fill in the PedsQL in spite of initial consent are called ‘nonparticipants’.
Baseline variables
In accordance with the definition of Statistics Netherlands 2, children were considered to be
non-Western immigrants if they themselves or one or both parents had been born outside
Western Europe. Primary causes of ESRD were classified into two categories: 1) acute onset
(e.g. dense deposit disease, hemolytic uremic syndrome (HUS), tubular necrosis, tumor and
nephrotic syndrome) and 2) insidious onset (e.g. urinary tract malformation, chronic renal
failure, renal vascular disease, congenital diseases). Parental educational attainment was
defined as the highest educational level of any parent as reported by the parents themselves.
PedsQL Generic Scale 4.0
In order to compare the HRQoL scores of children with ESRD to the healthy population, we
used the generic version of the Paediatric Quality of Life Inventory 4.0 (PedsQL) 13, because
of its broad age range (5 to 18 years), its inclusion of self-reports (8 to 18 years) as well as
proxy-reports (5 to 7 years), its short completion time (approximately 5 to 10 minutes) and
good feasibility, validity and reliability 6;14.
The 23-item PedsQL, version 4.0 Generic Core Scales, are grouped into four HRQoL subscales: 1) physical health (8 items), 2) emotional functioning (5 items), 3) social functioning
(5 items) and 4) school functioning (5 items). We used child self-report for children from 8
to 12 years old and 13 to 18 years old and parent proxy-report for children from 5 to 7. The
child or parent is asked how much of a problem each item has been during the past month
on a 5-point Likert scale (0 = never a problem; 1= almost never a problem; 2 = sometimes a
problem; 3 = often a problem; 4 = almost always a problem). Item scores are reversed and
linearly transformed to a 0 to 100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0), so that higher
scores indicate better HRQoL. Scale scores are computed as the sum of the items divided
by the number of items. In addition to the four subscales, there are two summary scores
(Psychosocial health and Total score). Previous research provided data on a healthy Dutch
population consisting of 198 Western and 51 non-Western children 15.
Statistical analysis
All analyses were performed using SPSS 18.0 for Windows statistical software. Mann- Whitney U tests, Chi2 test, or Fisher’s exact test, if necessary, were used to compare continuous
and categorical variables, respectively in two groups. First, known baseline variables were
compared between participants and non-participants, then between non-Western and
Western participants.
PedsQL scores were compared between non-Western and Western participants with ESRD
and between non-Western participants with ESRD and healthy non-Western children. To
report the magnitude of these differences, standardized mean differences (pooled effect
size) were calculated by dividing the difference in mean scores between the non-Western
children with ESRD and the reference group (first the Western participants with ESRD, then
the healthy non-Western children) by the pooled standard deviation. Standardized mean
differences of up to 0.2, 0.5, or more than 0.8 were considered to be small, moderate or
90
Children from non-Western origin
Table 1. Demographic and disease characteristics of participants and nonparticipants.
Age (years) at inclusion RICH-Q
Participants
n=174
Non-participants*
N=85
Median (range)
12.3 (1.8-18.7)
10.0 (0.0-18.6)
43.5 (3.6- 209.9)
Median (range)
13.2 (0.4-18.5)
10.4 (0.0-18.4)
20.2 (0.2 -195.6)
0.59 a
0.65a
<0.001a
Age at onset ESRD
Duration of RRT (months)
P value
N
%
N
%
Sex (male)
89
51
58
68
0.009b
Ethnicity (Caucasian)
144
83
67
79
0.44 b
Non-Western
56
32
39
46
0.03 b
Country of residence
- The Netherlands
- Belgium
- Germany
106
61
7
61
35
4
50
23
12
59
27
14
0.99 b
Cause of ESRD
- Glomerulopathy
36
21
17
20
8
4
3
4
- Urinary-tract malformation
60
35
27
32
- Dysplasia
21
12
10
12
- Primary interstitialnephritis
5
3
3
4
- Tubular necrosis
9
5
6
7
- Other
35
20
19
22
Haemolytic
syndrome
0.01 b
uremic
*The group of non-participants consists of patients/parents who did not give consent (n=29) and patients/
parents who did not complete the PedsQL (n=56), ESRD= End-stage renal disease, a= Mann Whitney U, b= Chi
Square
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6
Chapter 6
Table 2. Demographic and disease characteristics of non-Western and Western
participants.
Non-Western participants
N=55
N
Western participants
N=119
Median (range)
N
Median(range)
Age at onset RRT (years)
9.4 (0.1-17.0)
10.4 (0.0-18.6)
Age PedsQL (years)
12.0 (5.1-18.1)
13.8 (5.2-18.9)
Duration of RRT (months)
22.6 (1.0-167.0)
12.8 (0.4 -180.9)
Duration
(months)
of
dialysis
46*
18.9 (1.0- 94.5)
85*
11.5 (0.9 - 88.1)
N
%
N
%
PedsQL Age categories:
-5-7 years (proxy report)
-8-12 years (self report)
-13-18 years (self report)
14
16
25
25
29
46
25
30
64
21
25
54
Sex (male)
30
55
59
50
Ethnicity (Caucasian)
28
51
116
97
P value
0.40 a
0.34 a
0.08 a
0.02 a
0.59
0.54 b
<0.001
b
0.71 b
Country of Residence
(Netherlands)
36
65
70
59
Acute onset of ESRD
13
24
40
34
0.184 b
0.010 b
Mode of RRT at time of
PedsQL
-HD
-PD
-Tx
55
25
13
17
45
24
31
119
27
40
52
23
34
43
Comorbidity
- Comorbidity present
- No comorbidity
- Information missing
35
15
5
64
27
9
58
31
30
49
26
25
a Mann Whitney U, b Chi Square, c Chi Square, excluding missing values
* Not all participants have undergone dialysis; some were only treated with renal transplantation
92
0.56c
Children from non-Western origin
large, respectively 16.
Furthermore, the HRQoL scores of children with ESRD were standardized based on the
healthy norm population, for non-Western and Western participants separately. The proportion of children with an impaired HRQoL was based on a PedsQL score <5th percentile
(i.e. Z-score <-1.65) of the healthy Dutch population. Scores below the 5th percentile of the
healthy non-Western population and of the healthy Western population were considered
as consistent with impaired HRQoL for both non-Western and Western participants, respectively. The mean difference and 95% confidence interval of the proportions of non-Western
and Western participants with an impaired HRQoL was calculated using Confidence Interval
Analysis 17.
Finally, a logistic regression analysis was performed to quantify the association between
Non-Western immigrant status and impaired HRQoL, adjusted for confounding. All possible
confounders were added one at a time, in a pre-specified order, to a model containing only
the central determinant (non-Western status). If addition of a potential confounder to the
model resulted in a change of > 10% in the regression coefficient b of the primary determinant (non-Western status), this variable was kept in the model. The following potential
confounders were investigated consecutively: age, gender, duration of renal replacement
therapy (RRT), number of school days missed in the last 3 months, RRT modality, highest
educational attainment of the parents, country of residence, co- morbidity, parental work
situation, parental marital status, number of children and assistance with completing the
PedsQL.
Results
Participants
Between September 2007 and September 2012, 259 children (5-18 years) with ESRD and
their parents were asked to participate in the study. Informed consent for the HRQoL was
given by 230 children and their parents (89%). Twenty-nine children or their parents either
chose not to participate in this study or were unable to participate because of language
problems. 174 of 230 participants completed the PedsQL questionnaire (overall response
rate 76%). The 29 children who chose not to participate and the 56 non-responders together
are denoted as non-participants (n=85). The socio-demographic and disease characteristics
of participants and non-participants are shown in Table 1. At the time of investigation 105
children were on dialysis and 69 had a functioning renal graft. The median [range] age of
all the participants was 12.3 [1.8-18.7] years. Participants and non-participants differed significantly on several characteristics: the non-participating children had been on RRT for a
shorter duration, were more frequently male and from non-Western background.
The demographic and disease characteristics of non-Western and Western participants are
shown in Table 2 and more detailed in Appendix 2. Fifty-five of the 174 participants (32%)
were from non-Western background. One of these was a child born in India adopted by
Belgian parents (Appendix 2). The non-Western children were more frequently treated with
haemodialysis, and had been treated with dialyses for a longer period compared to Western
children (Table 2). Furthermore, non-Western participants or their parents had had more
assistance completing the PedsQL in general and more assistance from a doctor or a nurse
than from other people compared to Western participants. The parents of the non-Western
children had a lower educational attainment and were more frequently unemployed than
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6
Chapter 6
Mean diff. [95% CI] of
percentage with
impaired HRQoL
Figure 1. Percentages of non-Western and Western children with ESRD with
impaired HRQoL, defined as a PedsQL score < 5th percentile (SD 1.65) of the nonWestern norm population (n=51) and of the Western norm population (n=198),
respectively.
The upper part shows the mean difference and 95% confidence interval of the percentages in the lower part.
94
Children from non-Western origin
Western parents. Furthermore, non-Western participants or their parents received more
assistance completing the PedsQL in general and more assistance from a doctor or a nurse
than from other people compared to Western participants. No significant differences were
found between participating non-Western and Western children with respect to age, duration of RRT, gender, country of residence, co-morbidity, parental marital status, and number
of school days missed in the three month preceding completion of the PedsQL.
HRQoL
The absolute PedsQL scores are shown in Appendix 3. Absolute and standardized mean
differences between PedsQL scores of non-Western and Western participants and of nonWestern participants and healthy non-Western children from the Dutch norm group are
shown in Table 3. No significant differences were found in the absolute values of the subscales between non-Western children with ESRD and Western children with ESRD (standardized mean differences ranged from -0.17 to 0.13). Non-Western children with ESRD showed
lower HRQoL scores compared to healthy non-Western children in the Dutch norm group
(standardized mean differences ranged from -1.51 to - 0.99). Figure 1 shows the percentages of participants with impaired HRQoL and the differences [95% confidence interval] in
percentages between Western and non-Western participants. Fifty-six percent of the nonWestern children with ESRD had an impaired HRQoL compared to healthy non-Western children, and 49% of the Western children with ESRD had impaired HRQoL compared to healthy
Western children. The proportion of non-Western participants with impaired HRQoL was
significantly larger than the proportion of Western participants on the subscales emotional
and school functioning (mean difference [95% CI] 20.8 [5.8-35.8]% and 20.4 [4.8-36.1]%,
respectively).
The results of the logistic regression analysis are shown in Table 4. Non-Western children
had an OR [95%CI] of 3.3 [1.5-7.1] of having impaired emotional functioning, adjusted for
assistance with completion of the PedsQL and RRT modality. Their OR [95%CI] for impaired
school functioning was 2.2 [1.1-4.2] adjusted for RRT modality.
Discussion
To our knowledge this is the first study to compare HRQoL between non-Western and Western children with ESRD. We found that both Western and non-Western children with ESRD
had significant impairment of HRQoL compared to their healthy counterparts from a Dutch
norm group. Within the ESRD group, non-Western patients had a higher risk for having impaired emotional and school functioning compared to Western children.
Several studies have shown that children with ESRD have an impaired HRQoL compared to
healthy controls 4;6;7;18. Our study shows that approximately half of children with ESRD have
impaired HRQoL based on the 5th percentile of the reference group. On top of the disadvantage of having ESRD, we assumed that the non-Western status might be of extra disadvantage since it has been shown that healthy non-Western adults and adolescents have
an impaired HRQoL compared to healthy Westerns 19;20. The disadvantage of being from
non-Western origin was also described in Dutch children with other chronic diseases 21-23. A
Dutch study on children with asthma identified ethnicity as well as insufficient comprehension of the Dutch language as independent risk factors for uncontrolled asthma 22.
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6
Chapter 6
A double disadvantage was also described in children with sickle cell disease. These children
reported lower HRQoL scores compared to healthy children but comparable to their healthy
siblings, except for the disease specific domains, implying that at least part of the impaired
HRQoL was related to specific problems of the immigrant community, such as financial and
social problems 21. Studies on HRQoL in non-Western ESRD patients are scarce. Lopes et al.
described differences in HRQoL in adults on chronic dialysis between different ethnic groups
in the United States 24. They found that native Americans reported lower HRQoL on social
functioning and mental health than Caucasians. To our knowledge there are no previous
studies conducted concerning HRQoL between non-Western and Western children with
ESRD.
Several studies have shown that Western children with ESRD are at particularly high risk for
underperforming academically, emotional and social problems, and adjustment difficulties
and psychological stress in adult life 25;26. The combination of physical impairment and low
educational attainment is supposed to be an important barrier for finding employment in
adult life for these patients. The fact that non-western immigrant children with ESRD reported lower HRQoL than Western children with ESRD, especially on school functioning is
therefore an alarming fact to their developmental trajectory. Non-Western children with ESRD were more frequently treated with centre haemodialysis. We know that haemodialysis treatment schedules are burdensome and interfere with
school attendance and participation in peer-related activities. This may have a severe impact on school performance as was demonstrated in a longitudinal study on HRQoL of children on dialysis over a 2 years period 18. The parents reported their children as functioning
increasingly worse at school over time 18. Non-western children with ESRD could have a
double disadvantage since school is a multi-cultural setting where students need social, material, physical and mental skills to attain school achievements. In non-Western immigrants
these skills are often lacking, even in healthy children 27. Statistics Netherlands reported that
healthy non-Western children had low school performance, more grade repetition and higher school dropout compared to Dutch students2. The results of a Dutch study from Driessen
et al. showed that parental educational attainment plays a central role in the explanation of
differences in the school performance of the children 28. The ethnic origin of the family, the
use of Dutch language at home, and the parental level of mastery of the Dutch language
were also found to be of influence 28.
Three hypotheses have been constructed about factors that determine differences in health
outcome among ethnic groups and migrants. Some authors attribute an essential role to
socioeconomic inequalities, others emphasize the importance of genetic and cultural factors, and other authors think that intercultural difficulties between doctors and patients
play an important part influencing health 29-31. In this study we only had data on parental
educational attainment as a surrogate for socio-economic inequality, but this was not shown
to be a confounder, possibly due to a type II error. The influence of cultural factors is difficult
to investigate and might play an important role. However, significant differences between
groups of various ethnic backgrounds were not found within the immigrant population in
this study, again possibly due to the small sample size. Finally, to what extent intercultural
difficulties between doctors and patient families play a role in the Netherlands, Belgium and
Germany is not clear.
96
Children from non-Western origin
Table 3. Absolute and standardized mean differences between PedsQL scores of
non-Western and Western participants (ESRD) and of non-Western participants
and healthy non-Western children from the Dutch norm group.
ESRD
Non-western children
Non-Western vs. Western
participants
ESRD vs. healthy non-western
population
Mean diff
Standardized
mean diff
Mean Diff
Standardized
mean diff
Total Score
0.14
0.01
-19.10
-1.48
Psychosocial
Health
-1.45
-0.09
-18.50
-1.40
Physical health
2.94
0.13
-20.74
-1.38
Emotional
functioning
-2.72
-0.15
-16.42
-0.99
Social functioning
0.48
0.03
-17.09
-1.02
School functioning
-3.01
-0.17
-22.16
-1.51
*Social functioning is missing in one Western child with ESRD, **School functioning is missing in two Western
6
children with ESRD, ESRD= End-stage renal disease, mean diff= mean difference
97
98
0.6 [0.3-1.2]
0.3 [0.1-0.7]
0.4 [0.2-0.9]
0.5 [0.2-0.9]
0.2 [0.1-0.4]
0.3 [0.2-0.7]
2.6 [1.3-5.2]
1.6 [0.9-3.0]
1.4 [0.7-3.0]
2.5 [1.2-5.2]
3.3 [1.5-7.1]
1.8 [0.9-3.9]
1.5 [0.7-3.0]
1.5 [0.8-2.8]
1.6 [0.8-3.4]
2.9 [1.5-5.8]
1.8 [0.9-3.7]
1.4 [0.7-2.5]
1.Non-Western
2. RRT modality (dialysis vs.
transplantation)
3. Assistance with completion of
PedsQL
2.7 [1.4-5.5]
0.5 [0.3-1.1]
2.3 [1.2-4.4]
School
functioning
2.2 [1.1-4.2]
1.7 [0.9-3.2]
1.6 [0.8-3.4]
0.3 [0.1-0.6]
1.2 [0.6-2.3]
Social
functioning
1.0 [0.5-2.1]
2.7 [1.3-5.4]
3.6 [1.7-7.7]
0.4 [0.2-0.9]
2.7 [1.4-5.4]
Emotional
functioning
2.5 [1.3-5.1]
2.0 [0.9-4.1]
1.2 [0.6-2.3]
1.6 [0.9-2.9]
1.0 [0.5-2.0]
3.0 [1.6-5.8]
1.3 [0.7-2.5]
1.5 [0.8-2.7]
1. Non-Western
2. RRT modality (dialysis vs.
transplantation)
1.6 [0.8-3.2]
0.4[0.2-0.9]
1.3[0.7-2.4]
1.9 [0.9-3.9]
0.2 [0.1-0.4]
1.2 [0.6-2.2]
Physical
Health
1.9 [0.9-3.9]
0.3 [0.2-0.7]
1.4 [0.7-2.6]
Psychosocial
Health
1. Non-Western
2. Assistance with completion of
PedsQL
Models adjusting for confounding
Non-Western
Unadjusted model
Total score
Table 4. Results of logistic regression (odds ratio OR [95%CI]) to investigate the association between non-Western
immigrant status and impaired PedsQL total and subscales scores adjusted for confounding.
Chapter 6
Children from non-Western origin
Limitations
Some limitations of the study should be emphasized. Not all eligible families participated,
and the participants were not a random sample of the entire population. The fact that we
used the PedsQL in Dutch, French, German or English led to the exclusion of those nonWestern immigrants who were not able to understand one of these languages. It is likely
that the participating non-Western patients represent a relatively well educated group, and,
as a consequence, our findings may be too optimistic as this selection may have led to underrepresentation of children with a worse HRQoL.
From each participant the first completed questionnaire was used in this study. This is a
possible explanation for the difference in duration of RRT between the participants and
non-participants. The centre from Cologne (Germany) joined the RICH-Q study in 2011, this
explains the relatively small number of participants from Germany.
Implications
ESRD and its treatment both have a severe impact on the psychosocial development of
children as it affects school and emotional functioning. The fact that non-Western patients
reported a lower HRQoL than their Western counterparts, especially on emotional and
school functioning is extremely worrying. We need to raise awareness of this problem and
give non-Western children with ESRD special attention. To systematically assess psychosocial functioning, and to monitor children over time Patient Reported Outcomes (PROs) can
be used by professionals in paediatric health care. In the past decades there has been a
growing interest in these PROs as a tool for the paediatricians to discuss psychosocial issues
during medical consultation 32. For example, a recent study investigating the effectiveness
of the use of Health Related Quality of life (HRQoL) assessments for children with JIA in
clinical practice, showed that providing information to paediatricians on a child’s HRQoL,
leads to significantly more discussion of emotional and social functioning during consultation and improves the child’s, parent’s, and paediatrician’s satisfaction with the provided
care 33. When paediatric psychologists and paediatricians work together, PROs can be used
to closely monitor children with chronic illnesses in a multidisciplinary context and referral
to psychosocial interventions can be better facilitated 33.
What type of special care these children and families need is a subject for further investigation. Additional psycho-educational support and more stimulation and opportunity to
attend school could be a helpful to enhance successful development towards independency
in adulthood. To stimulate school performance, dialysis units should emphasize school activities during dialysis and maybe more tailor made lessons for non-Western children should
be developed. However, attending a regular school would always be preferable because of
the social advantages of being with peers. One way of facilitating school attendance, if rapid
transplantation is unachievable, would be to promote peritoneal dialysis or haemodialysis
at home instead of centre haemodialysis.
In conclusion, the present study shows a “double disadvantage” for non-Western children
with ESRD in HRQoL for school en emotional functioning. We believe that paediatric nephrologists and members of the multi-disciplinary team need to pay more attention to the development of emotional en school functioning in order to create conditions for an optimal
HRQoL.
99
6
Chapter 6
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Children from non-Western origin
Appendix 1: PedsQL™ 4.0 Generic Core Scales Child Self-Report Item Content.
Physical Functioning Scale
Never - almost never - sometimes - often - almost
always 1. It is hard for me to walk more than one block
2. It is hard for me to run
3. It is hard for me to do sports activity or exercise
4. It is hard for me to lift something heavy
5. It is hard for me to take a bath or shower by myself
6. It is hard for me to do chores around the house
7. I hurt or ache
8. I have low energy
Emotional Functioning Scale
1. I feel afraid or scared
2. I feel sad or blue
3. I feel angry
4. I have trouble sleeping
5. I worry about what will happen to me
Social Functioning Scale
6
1. I have trouble getting along with other kids
2. Other kids do not want to be my friend
3. Other kids tease me
4. I cannot do things that other kids my age can do
5. It is hard to keep up when I play with other kids
School Functioning Scale
1. It is hard to pay attention in class
2. I forget things
3. I have trouble keeping up with my schoolwork
4. I miss school because of not feeling well
5. I miss school to go to the doctor or hospital
PedsQL™ is available at http://www.pedsql.org website
Varni and Burwinkle Health and Quality of Life Outcomes 2006 4:26 doi:10.1186/14777525-4-26
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Chapter 6
Appendix 2: Demographic characteristics of non-Westerns and Western participants
and their parents.
Origin of Parents
Country of birth of the child
Non-Western participants
N=55
Belgium: 1 (adoption)
Morocco: 11
Turkey: 10
Surinam: 7
Dutch Antilles or
Caribbean:3
Asia: 3
Africa (other): 10
Middle East (other):9
Western participants
N=119
The Netherlands: 23
Belgium: 6
Germany: 0
Morocco: 3
Turkey: 1
Surinam: 3
Asia: 2
Dutch Antilles or
Caribbean: 3
Africa (other): 7
Middle East (other):7
The Netherlands:
73
Belgium: 40
Germany: 5
Greece: 1
N %
The Netherlands:
71
Belgium: 40
Germany: 6
Spain: 1
Greece: 1
N %
P Value
Highest educational attainment of
the parents:
- Post secondary education
- Other
- Information missing
10 18
20 37
25 45
Work situation:
- Unemployed
- Employed
- Information missing
14 25
13 24
28 51
25 21
65 55
29 24
0.020 b
Parental marital status:
- Married/ living together
- Not living together
- Information missing
23 42
6 11
26 47
64 54
31 26
24 20
0.22 b
56 47
39 33
24 20
Number of children
- More than 2 children
- 1 or 2 children
-missing
12 22
18 33
25 45
Parents/ patient had Assistance with
completion of PedsQL
32 58
43
36
Assistance from:
- Doctor/ nurse
- Family/Friends
- Other
10 31
18 56
4 13
2
41
0
5
95
0
Number of school days missed in
last 3 months
30 15 (1-92)
81
17 (1-92)
a Mann Whitney U, b Chi Square, excluding missing values
104
32
66
21
27
55
18
0.014 b
0.56 b
0.006 b
<0.001 b
0.64 a
67.4 (19.1)
64.4 (17.5)
73.9 (20.3)
58.7 (17.2)
Physical health
Emotional functioning
Social functioning
School functioning
60.0 [25-94]
80.0 [30-100]
60.0 [25-100]
68.8 [19-97]
66.7 [38-93]
67.4 [32-92]
12.0 [5.18-18.1]
Median [range]
66.3 [21-99]
66.7 [18-100]
65.6 [0-100]
65.0 [10-100]
75.0* [25-100]
60.0** [15-100]
67.1 (15.6)
64.4 (24.4)
67.1 (19.1)
73.4* (17.7)
61.7** (18.6)
13.8 [5.2-18.9]
Median [range]
66.1 (17.0)
Mean (SD)
Western participants
N=119
80.7 (11.4)
91.0 (11.7)
80.8 (15.5)
88.1 (8.8)
84.2 (11.1)
85.6 (9.4)
Mean (SD)
80.0 [50-100]
95.0 [40-100]
85.0 [40-100]
87.5 [63-100]
85.0 [47-100]
85.9 [57-100]
12.9 [7.1-17.7]
Median [range]
Non-Western children
N=51
Healthy Dutch Norm group
*Social functioning is missing in one Western child with ESRD, **School functioning is missing in two Western children with ESRD, data is presented in median [range],
ESRD= end stage renal disease
65.7 (15.0)
66.3
(15.5)
Psychosocial Health
Total Score
Age
Mean (SD)
Non-Western participants
N=55
ESRD group
Appendix 3. Mean (sd) and median [range] PedsQL score for all (non-Western and Western) children with ESRD and the
healthy non-Western children from the Dutch norm population.
Children from non-Western origin
6
105