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Quality of life in chronic illness: perceptions of parents and
paediatriciansA J Janse, G Sinnema, C S P M Uiterwaal, J L L Kimpen, R J B J Gemke. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Arch Dis Child 2005;90:486–491. doi: 10.1136/adc.2004.051722
Aims: To investigate the differences in perception of quality of life between parents of chronically illchildren and paediatricians at diagnosis and follow up. Quality of life was assessed using the (HUI3).
Methods: Longitudinal study (July 1999–January 2002) of 37 paediatricians and 181 parents of patients
(children aged 1–17 years) with cystic fibrosis admitted for a pneumonia or patients with newly diagnosed
. . . . . . . . . . . . . . . . . . . . . . .
acute lymphatic leukaemia, juvenile idiopathic arthritis, or asthma. Main outcome measure waspercentage agreement on the attributes of the HUI3 between parents and paediatricians.
Results: Differences in perception of health and wellbeing between paediatricians and parents of children
with a chronic disease were found, not only at diagnosis but also after a period of follow up. Differences
were particularly clear in the subjective attributes emotion (range of agreement 28–68%) and pain/
discomfort (range of agreement 11–33%). In all patient groups, at baseline and follow up, the
paediatrician assessed the patient to have less pain/discomfort in comparison to the parents. Despite a
prolonged patient- paediatrician relationship, differences at follow up did not decrease compared to
Conclusion: At the onset of a chronic disease, but also after a period of follow up, quality of life of
paediatric patients may be misunderstood by healthcare professionals, especially in the subjective
attributes. Systematic assessment of quality of life may contribute to better understanding between
. . . . . . . . . . . . . . . . . . . . . . .
To monitor the effectiveness of clinical practice and to proxyandtoassesstheQoLoftheirchildren.Patientswith
determine the efficacy of new treatment strategies
acute lymphoblastic leukaemia (ALL) were chosen because
general indicators of outcome are essential. Physicians
the HUI has been successfully used in this group.9–11 Patients
predominantly use conventional clinical, laboratory, and
with juvenile chronic arthritis (JIA), cystic fibrosis (CF), and
radiological measures to assess the success of an intervention
asthma were included because our hospital aims to be a
and implicitly estimate the wellbeing of the patient. In
centre of excellence for these diseases. Furthermore, we
addition to these measures the importance of quality of life
expected the attributes of the HUI3 to match well with major
(QoL) assessment is increasingly recognised. In randomised
clinical trials QoL is becoming an important secondary
We hypothesised that differences in QoL outcomes
outcome.1–5 As improved treatment leads to substantial gains
between parents and paediatricians would be greatest for
in survival rates (for example, in most cancers and cystic
the subjective attributes. We had no a priori expectations
fibrosis), the prevalence of children with a chronic disease is
about paediatricians over- or underestimating QoL in
increasing.6 Differences in perception of the wellbeing of
comparison with parents of chronically ill children.
patients between patients and their physicians may interferewith the effectiveness of treatment.7 Little is known in the
literature about the differences in perception of wellbeing
between paediatric patients and physicians. A recent meta-analysis showed that on more objective attributes (sensation,
self-care, and mobility) the agreement between parents and
(Wilhelmina Children’s Hospital, University Medical Centre
physicians was higher than on attributes with a subjective
Utrecht, Utrecht; Sophia Children’s Hospital, Erasmus
nature (emotion, cognition, and pain/discomfort).8 However,
University Medical Centre, Rotterdam; Emma Children’s
none of the reviewed studies revealed the direction of the
differences in perception of QoL between parents and
Asthma Centre Heideheuvel, Hilversum) in the Netherlands
during the period July 1999 to January 2002. Eligibility
The aim of the present longitudinal study was to analyse
criteria included children admitted with newly diagnosed
the differences in perception of QoL between parents of
ALL, children with CF admitted for pneumonia (CF-adm),
chronically ill children and paediatricians at diagnosis and
children with the diagnosis of JIA or asthma and their first
follow up, and to describe the direction of these differences.
visit to the outpatient clinic, aged 1–17 years (patients with
QoL was assessed using the Health Utilities Index mark 3
asthma, 4–17 years old), and the ability of the parents to
(HUI3). In children under the age of 10 years, parents
understand and read the Dutch language.
generally act as a proxy for their child. Children 10 years andolder are capable of giving reliable answers about their healthstatus. However, until the age of 17 years, parents still have acrucial role in medical decisions concerning their child. In
Abbreviations: ALL, acute lymphoblastic leukaemia; CF, cystic fibrosis;
these decisions, parents rely on their perception of the health
CF-adm, children with CF admitted for pneumonia; HUI3, Health Utilities
status of their child. Therefore, parents were asked to act as a
Index mark 3; JIA, juvenile chronic arthritis; QoL, quality of life
QoL was assessed using a 42 item interview questionnaire
Patients were divided into four groups based on their
(baseline) and a 15 item self-complete questionnaire (follow
diagnosis. For each group of patients the following procedure
up) developed for parents. At baseline parents completed the
interview questionnaire administered by the principal inves-
Absolute differences between physicians and parents for
tigator (AJJ). The interview was completed during the first
each attribute at baseline and at follow up were calculated
week following admission (ALL, CF-adm), or after the first
using the formula: attribute level physician 2 attribute level
visit to the paediatricians in the outpatient clinic (JIA,
parent. The outcome was dichotomised into presence (‘‘1’’) or
asthma). The follow up assessment was completed after
absence (‘‘0’’) of difference between physician and parent.
induction therapy, before the start of methotrexate according
All outcomes zero become ‘‘0’’, all negative and positive
to the SNWLK-ALL-9 protocol (ALL),12 6–8 weeks after
outcomes become ‘‘1’’. Next, the percentage agreement
admission (CF-adm), three months after the first visit
between pairs of physicians and parents for each attribute
(asthma) or six months after the first visit (JIA) in the
were calculated exactly. Subsequently, the proportions of
outpatient clinic. The follow up interval for each disease was
differences between parents and physicians ( = percentage
different and determined by the time needed for stabilisation
disagreement/100) at baseline (P1) and at follow up (P2) for
of the initial therapeutic effect according to consensus
each attribute were calculated. The differences in proportions
reached during meetings with clinical experts. In patients
at baseline and follow up were given by P1–P2, 95% CI were
with ALL the follow up time was determined by the SNWLK
protocol.12 Following the consultation or admission of the
CIs for differences in proportions that did not include 0 were
patient, the paediatricians completed the Multiattribute
considered statistically significant. A non-parametric test forpaired samples (McNemar test) was used to test the null
Health Status classification System HUI3 (described by
hypothesis that differences in perception between parents
Feeny et al).13 The paediatricians completed the HUI3
and physicians were the same at baseline and at follow up.
independently from the parents. Parents and paediatricians
Baseline differences in perception for pairs with and without
were asked to consider the health status of each patient for
missing data at follow up were tested using a x2 test (for a
two way frequency table). A p value ,0.05 was considered
Information from these questionnaires was converted to
statistically significant. The change in the differences (delta)
health state vectors in the HUI3 formats by an established
for each attribute was calculated for all pairs by subtracting
algorithm.14 The Health Utilities Index mark 2 and mark 3
the absolute differences at follow up from the absolute
(HUI2 and HUI3) are generic multiattribute health status
classification systems.13 They have been used in a number of
A 10% random sample of all the collected data was taken
clinical studies of children with cancer,15–25 extremely low
(SPSS version 10.0), entered twice into the computer by two
birth weight infants,26 27 and survivors of paediatric intensive
different persons, and verified (SPSS data entry builder
care.28 The HUI3 has been described in detail by Feeny and
version 1.0). The error rate was acceptable with 0.33%. The
colleagues.13 Briefly, it consists of eight attributes. Each
SPSS statistical software (version 10.0) was used for all
attribute consists of 5–6 levels representing the range of
functioning from normal (1) to severely impaired (5 or 6).
The attributes forming the HUI3 system are vision (1–6),
hearing (1–6), speech (1–5), ambulation (1–6), dexterity
(1–6), emotion (1–5), cognition (1–6), and pain/discomfort
At baseline the parents of 185 of the 187 eligible children
(1–5). For example, the attribute emotion represents the
gave consent to participate. Reasons for refusal were the
following levels: level 1, happy and interested in life; level 2,
feeling of interference with the disease (JIA, n = 1) and
somewhat happy; level 3, somewhat unhappy; level 4, very
psychological distress when faced with the diagnosis ALL
unhappy; and level 5, so unhappy that life is not worthwhile.
(n = 1). Four other patients were excluded from furtheranalysis because the paediatricians did not return the
questionnaire. The final baseline analysis included 181
Written informed consent was obtained from all parents and
patients. Complete pairs at follow up were available for 145
of patients over 12 years of age who agreed to participate in
of the 181 patients. Reasons for failure to participate at follow
the study. The medical ethics committees of all participating
up were death (1 patient), no appointment or not showing up
centres approved the study protocol.
at the outpatient clinic (26 patients), and no returnedquestionnaires (6 patients and 3 physicians). Table 1 showscharacteristics of the study group.
Differences between parents and paediatricians at
diagnosis and follow upFor each group of patients the percentage of pairs with exact
agreement between parents and physicians is given in fig 1.
Percentage male/female diagnosis (follow up)
For all patient groups the agreement for the attributes vision
Diagnosis (follow up); no. of complete pairs
and hearing were above 90%, in contrast to the agreement for
the attributes pain/discomfort and emotion, which were low
in all groups. There were no baseline differences for patients
without and with missing data. The proportion of differences
for the attribute pain/discomfort in patients with asthma and
the attributes ambulation and emotion in patients with JIA
were significantly lower at follow up than at baseline
(table 2). For all other attributes no significant differenceswere found in the proportion of differences at baseline versus
ALL, acute lymphatic leukaemia; CF, cystic fibrosis admitted for
at follow up. Figure 2 shows the direction of the differences
pneumonia; JIA, juvenile idiopathic arthritis.
in QoL perception between paediatricians and parents.
Agreement at baselineAgreement at follow up
Figure 1 Percentage agreement between paediatricians and parents of chronically ill children (ALL, asthma, CF, and JIA) for each HUI3 attribute at
Positive values indicate the paediatrician assessing more
childhood cancer.15–20 23–25 It is known from the literature that
impairment than the parents did, and negative values
QoL of patients can change dramatically during treatment.
represent the parent assessing more impairment than the
For example, the QoL of children with recurrent acute otitis
paediatrician did. The differences for the attributes vision,
media and/or chronic otitis media with effusion significantly
hearing, dexterity, and cognition were relatively small and
improved after surgical intervention,30 whereas the QoL of
are therefore not shown. For the attribute pain/discomfort
children with chronic viral hepatitis temporarily deteriorated
the differences were most perspicuous. In all patient groups,
during alpha-interferon therapy.31 Also, differences in per-
at baseline and follow up, the parents assessed the patient to
ception of QoL between parents and physicians and the
have more pain/discomfort than the paediatricians thought
magnitude of these differences are likely to be susceptible to
change in time. In a study of adults with cancer it was foundthat the agreement for the more private domains (such as
feelings, social functioning, overall QoL, and pain/discom-
We have found that differences in the perception of health
fort) was slightly higher at follow up than at baseline. Firstly,
between parents of children with a chronic disease and their
it is suggested that monitoring the patients’ QoL over time
paediatricians exist at diagnosis and after a period of follow
may increase the caregivers’ awareness of wellbeing of the
patient.32 Secondly, the objective domains are visible and
In general, the percentage agreement between parents and
more concrete than the subjective domains. Therefore, a
physicians for each patient group was found to be higher in
higher agreement can be expected in the former.33 However,
the objective than in the subjective health attributes. Our
in our study the agreement did not essentially change over
earlier findings from the literature showed a pooled
follow up periods, although patients were treated for their
percentage agreement of 84–89% for the objective attributes
acute symptoms and patients and physicians became
and of 69–77% for the subjective domains.8 In the present
acquainted to each other. At follow up the rates of
study the agreement for the attribute pain/discomfort was
(dis)agreement remained fairly stable. Only for patients with
remarkably low for all patient groups. For the attribute
asthma (pain/discomfort) and for patients with JIA (ambula-
emotion, the agreement was lower than expected from the
tion and emotion) did the agreement improve at follow up.
literature.8 Probably, in our study the agreement for these
We found obvious differences in four of the eight attributes.
attributes was low because most patients consulted the
Paediatricians rated more emotional problems (ALL, CF, JIA)
physician in the acute phase of the disease, whereas in the
and problems with ambulation (JIA). Parents rated more
literature the HUI has been used mostly in survivors of
pain/discomfort (all patient groups) and speech impairments.
Number of pairs of disagreement at baseline
Table 2 Proportion and change of differences at
Number of pairs of disagreement at follow up
The proportions of differences between parents and physicians at
baseline (P1) and at follow up (P2) for each attribute were calculated. The
differences in proportions at baseline and follow up were given by P1–P2,95% CI were calculated using the formula P
Only attributes with 95% CI excluding zero were shown.
In our study we did not use the children’s’ assessment oftheir quality of life. However, for the attribute pain/
discomfort it is known from the literature that physicians
have the tendency to underestimate the intensity of thepatient’s pain/discomfort.32 34–36 A possible explanation for the
disagreement on speech impairment is that in young children
paediatricians tend to interpret HUI level 1 as language
development according to age, while parents scored level 3 as
Before further interpretation of our results, some metho-
dological issues need to be addressed. A strong feature of our
study is that the participation rate was high and that it had
very few missing data at baseline. Furthermore, we used avalidated instrument to measure quality of life as judged by
both physicians and the parents. Physicians completed the
assessments independent from parental HUI measurements.
Some other points need attention. Complete follow up data
were available for 80% of the patients. Because the
differences in perception of QoL at baseline were the same
for patients with and without complete follow up data, we
expect our results to be valid. Each paediatrician (n = 37)
completed the HUI several times (range 1–34). In 90 patients
the same paediatricians completed the assessment both at
baseline and at follow up. Due to a learning effect of the
paediatrician the percentage agreement in this study might
be higher than would have been found in regular clinical
practice. The HUI has been validated originally for children of
6 years and older.13 For young children only a few QoL
questionnaires are available (Functional Status, RAND, and
the TAPQOL).37–39 In a study assessing the health status in a
heterogeneous population of children admitted to intensive
care, it seemed feasible to classify children over 1 year of age
reliably, using the HUI by an observer well known to the
patient.40 In our study the HUI3 questionnaire was adminis-
tered to the parents by an interviewer at baseline and wasself-completed at follow up while the HUI3 was self-
completed by the paediatricians (both assessments). In the
literature different results are reported about the effect of the
Grootendorst et al found that subjects participating in the
Ontario Health Study, completing the interviewer adminis-tered form, reported less dysfunction than subjects complet-
ing the self-reported form.41 However Verrips et al reported
that the mean number of affected attributes was higher and
the mean utility score was lower when children (pretermborn infants now 14 years old) and proxies were interviewed
Figure 2 Number of pairs of disagreement between paediatricians
than when they self-completed the questionnaire.27 Both
and parents of chronically ill children (ALL, asthma, CF, and JIA) for
studies used the HUI3 to assess the health status. In our
the HUI3 attributes speech, ambulation, emotion, and pain/discomfort.
The HUI3 attribute levels of the parents were subtracted from the levels
study the participating paediatricians preferred the self-
of the paediatricians. The positive bars represent the number of pairs
completed form because of their time schedule at the
for each attribute where the paediatrician scored a higher level of
impairment within attributes than the parent at baseline (1; black) and
With regard to the implications of our study, we conclude
at follow up (2; dark grey). The negative bars represent the number of
that QoL should be given a fair amount of attention in
pairs where the parent scored a higher level of disturbances within
chronic paediatric illnesses. Good medical practice requires
attributes than the paediatrician at baseline (1; grey) and at follow up
an optimal relationship between physicians, patients, and
N Little is known in the literature about the differences in
N Clear differences in perception of health and wellbeing
perception of quality of life between patients and
between parents of children with a chronic disease and
N Objective attributes of health had a higher agreement
N In all patient groups, the physicians assessed the
between parents and physicians than the more
patient to have less pain/discomfort than the parents
N The magnitude of the difference in perception of quality
N Quality of life may contribute to better understanding
of life between parents and physicians is unknown
parents for mutual understanding of the impact of the
7 Cleeland CS, Gonin R, Hatfield AK, et al. Pain and its treatment in outpatients
with metastatic cancer. N Engl J Med 1994;330:592–6.
disease. Whatever the reasons for discrepancies of perception,
8 Janse AJ, Gemke RJ, Uiterwaal CSPM, et al. Quality of life: patients’ and
physicians should be aware that parents and physicians may
doctors’ don’t always agree. A meta-analysis. J Clin Epidemiol
look differently at the impact of the disease. This is
9 Feeny D, Leiper A, Barr RD, et al. The comprehensive assessment of health
particularly important for discrepancies pertaining to the
status in survivors of childhood cancer: application to high-risk acute
attributes emotion and pain, which are vital to the child’s
lymphoblastic leukaemia. Br J Cancer 1993;67:1047–52.
wellbeing. Physicians have the tools to improve on this, by
10 Felder-Puig R, Frey E, Sonnleitner G, et al. German cross-cultural adaptation
of the Health Utilities Index and its application to a sample of childhood cancer
better and more explicitly discussing these issues with
survivors. Eur J Pediatr 2000;159:283–8.
patients and parents. As differences in perception of QoL
11 Barr RD, Furlong W, Dawson S, et al. An assessment of global health status in
between parents and physicians may be different for various
survivors of acute lymphoblastic leukemia in childhood. Am J Pediatr HematolOncol 1993;15:284–90.
countries/populations, replication studies are needed. QoL
12 stichting nederlandse werkgroep leukemie bij kinderen. Protocol SNWLK-
evaluation may have a prominent role in assessing the
ALL-9. Onderzoek en behandeling van kinderen met Acute Lymfatische
changes of a patient’s condition in the natural course of the
disease or in the follow up of therapeutic interventions. In
13 Feeny DH, Torrance GW, Furlong WJ. Health Utilities Index. In: SpilkerB, ed.
Quality of life and pharmacoeconomics in clinical trials, 2nd edn.
this way, better mutual understanding of perception of QoL
Philadelphia: Lippincott-Raven, 1996:239–52.
between physician and the parents of the patient may
14 Feeny DH, Furlong WJ, Torrance GW, et al. Multiattribute and single-attribute
utility functions for the health utilities index mark 3 system. Med Care2002;40:113–28.
15 Barr RD, Pai MH, Weitzman S, et al. A multi-attribute approach to health
status measurement and clinical management-illustrated by an application to
We are grateful to all parents of the patients and all clinicians of the
brain tumors in childhood. Int J Oncol 1994;4:639–48.
16 Billson AL, Walker DA. Assessment of health status in survivors of cancer.
participating centres for their efforts of taking part in this study.
Special thanks are extended to E Visser and I van der Vaart, research
17 Feeny D, Leiper A, Barr RD, et al. The comprehensive assessment of health
nurses Sophia Children’s Hospital, for their practical help, and to C
status in survivors of childhood cancer: application to high-risk acute
Tims for her assistance with the data management.
lymphoblastic leukaemia. Br J Cancer 1993;67:1047–52.
18 Felder-Puig R, Frey E, Sonnleitner G, et al. German cross-cultural adaptation
. . . . . . . . . . . . . . . . . . . . .
of the Health Utilities Index and its application to a sample of childhood cancersurvivors. Eur J Pediatr 2000;159:283–8.
19 Glaser AW, Davies K, Walker D, et al. Influence of proxy respondents and
A J Janse, J L L Kimpen, Department of Paediatrics, Wilhelmina
mode of administration on health status assessment following central nervous
Children’s Hospital, University Medical Centre Utrecht, Netherlands
system tumours in childhood. Qual Life Res 1997;6:43–53.
G Sinnema, Department of Paediatric Psychology, Wilhelmina
20 Glaser AW, Abdul Rashid NF, U CL, et al. School behaviour and health status
after central nervous system tumours in childhood. Br J Cancer
Children’s Hospital, University Medical Centre Utrecht, Netherlands
C S P M Uiterwaal, Julius Centre for Health Sciences and Primary Care,
21 Trudel JG, Rivard M, Dobkin PL, et al. Psychometric properties of the Health
University Medical Centre Utrecht, Netherlands
Utilities Index Mark 2 system in paediatric oncology patients. Qual Life Res
R J B J Gemke, Department of Paediatrics, VU University Medical
22 Barr RD, Petrie C, Furlong WJ, et al. Health-related quality of life during post-
induction chemotherapy in children with acute lymphoblastic leukemia in
Role of the funding source: the sponsors of this study had no role in study
remission: an influence of corticosteroid therapy. Int J Oncol 1997;11:333–9.
design, data collection, data analysis, data interpretation, or writing of
23 Barr RD, Simpson T, Whitton A, et al. Health-related quality of life in survivors
of tumours of the central nervous system in childhood—a preference-basedapproach to measurement in a cross-sectional study. Eur J Cancer
24 Glaser AW, Furlong W, Walker DA, et al. Applicability of the Health Utilities
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25 Le Gales C, Costet N, Gentet JC, et al. Cross-cultural adaptation of a health
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3 Tetteroo E, Graaf van der Y, Bosch JL, et al. Randomised comparison of
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27 Verrips GH, Stuifbergen MC, den Ouden AL, et al. Measuring health status
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31 Iorio R, Pensati P, Botta S, et al. Side effects of alpha-interferon therapy and
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Clinical Evidence—Call for contributors
Clinical Evidence is a regularly updated evidence-based journal available worldwide both asa paper version and on the internet. Clinical Evidence needs to recruit a number of newcontributors. Contributors are healthcare professionals or epidemiologists with experience inevidence-based medicine and the ability to write in a concise and structured way.
Areas for which we are currently seeking authors:
N Child health: nocturnal enuresisN Eye disorders: bacterial conjunctivitisN Male health: prostate cancer (metastatic)N Women’s health: pre-menstrual syndrome; pyelonephritis in non-pregnant womenHowever, we are always looking for others, so do not let this list discourage you.
Being a contributor involves:
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The Clinical Evidence in-house team will conduct the searches for contributors; your task issimply to filter out high quality studies and incorporate them in the existing text.
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If you would like to become a contributor for Clinical Evidence or require more informationabout what this involves please send your contact details and a copy of your CV, clearlystating the clinical area you are interested in, to Klara Brunnhuber (firstname.lastname@example.org).
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High-Frequency rTMS Decreases Cigarette Smoking High-Frequency Repetitive Transcranial Magnetic Stimulation Decreases Cigarette Smoking Peter Eichhammer, M.D.; Monika Johann, M.D.; Alexander Kharraz, M.D.; Harald Binder, M.A.; David Pittrow, M.D.; Norbert Wodarz, M.D.; and Göran Hajak, M.D. epetitive transcranial magnetic stimulation (rTMS) R is a new technique that has been foun