DOI: 10.1111/ipd.
12253
A comparison of health-related quality of life in 5- and
10-year-old Swedish children with and without cleft lip
and/or palate
€
ANNA LENA SUNDELL1, CARL-JOHAN TORNHAGE2,3
& AGNETA MARCUSSON4
1
Department of Paediatric Dentistry, The Institute for Postgraduate Dental Education, J€ oping, Sweden, 2Department of
ovde, Sweden, 3Sahlgrenska Academy, Gothenburg’s University, Gothenburg, Sweden,
Paediatrics, Skaraborg Hospital, Sk€
and 4Maxillofacial Unit, Department of Dentofacial Orthopaedics, Link€oping University, Link€
International Journal of Paediatric Dentistry 2016
Background. The current understanding on health-
related quality of life (HRQoL) in young Swedish
children with cleft lip and/or palate (CL/P) is
sparse, and therefore, research on impact of CL/P
on HRQoL in children is needed.
Aims. To investigate HRQoL in 5- and 10-year-old
Swedish children with CL/P in comparison with
non-cleft controls. Also to analyse whether there
were any differences in HRQoL between children
with cleft lip (with or without cleft palate,
CL
P) and cleft palate only (CP) and/or gender
differences.
Design. A total of 137 children with CL/P and 305
non-cleft controls participated. HRQoL was mea-
sured with KIDSCREEN-52.
Introduction
Quality of life (QoL) is defined as an individ-
ual’s perceptions of his or her position in life
in the context of the culture and value sys-
tems in which he or she lives in relation to
personal goals, expectations, standards, and
concerns1. When personal judgement of one’s
health and disease is added to QoL, a multidi-
mensional assessment of a person’s satisfac-
tion with life, the health-related quality of
life (HRQoL), is valuated. Optimal HRQoL is
important for anyone, but, in spite of multi-
disciplinary medical care in children with cleft
lip and/or palate (CL/P), it can be overlooked
by the healthcare providers because of the
Correspondence to:
A. L. Sundell, Department of Paediatric Dentistry, The
Institute for Postgraduate Dental Education, Box 1030,
SE-551 11 J€ onk€oping, Sweden. E-mail: annalena.
sundell@rjl.se
© 2016 BSPD, IAPD and John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
onk€
oping, Sweden
Results. All children in the study exhibited
HRQoL within or above the age-matched refer-
ence interval of the method with similar results in
both groups; however, in the dimension ‘social
support and peers’, the 10-year-old children with
CL/P perceived lower HRQoL than the non-cleft
controls, but it did not reach statistical signifi-
cance. Type of cleft or gender did not influence
HRQoL.
Conclusions. Both 5- and 10-year-old Swedish
children with CL/P had HRQoL in the normal ref-
erence interval. Their general life situations were
well adjusted to their clefts, but the older children
with CL/P felt more excluded and less supported
by peers.
emphasis on remedying congenital deficien-
cies.
Even after surgical treatments instituted
early in life, some children with CL/P have
atypical nasolabial aesthetics and visible scar-
ring which together with anomalies in the
jaws and teeth can contribute to aberrant
facial appearance2,3. The children’s multiple
problems with speech impairment4, high fre-
quency of middle ear effusion, hearing
impairment5, and comprehensive medical and
dental treatments may have consequences for
the children’s daily lives and children0 s and
adult0 s perceptions of HRQoL6–11.
Research on HRQoL in children and adults
with CL/P have given inconsistent results,
with studies reporting similar, lower, and
higher HRQoL in individuals with CL/P com-
pared to non-cleft controls6–8,10,11. Similar
HRQoL have been reported in 8- to 12-year-
old German children with CL/P measured
with KINDL, a generic HRQoL instrument
for children and adolescents, and in 5- to
1
2 A. L. Sundell, C.-J. T€
ornhage & A. Marcusson
12-year-old children from Brazil measuring
QoL with Autoquestionnaire Qualit ee de Vie
Enfant Image (AUQEI) versus non-cleft con-
trols8,11. Also comparable HRQoL in five of
six subscales of the SF-36 (The Short Form 36
Health Survey), and lower score in the sub-
scale mental health, between Swedish adults
(20- to 47-year-olds) with unilateral cleft lip
and palate to norm data have been pre-
sented7. Lower total HRQoL, except for
higher score in the dimension ‘self-esteem’,
measured with KINDL have been shown in
4- to 7-year-old German children with CL/P
compared to the normal population10. Also
lower HRQoL have been reported by
Marcusson et al.6 in Swedish adults with cleft
lip and palate compared to controls. Further-
more, a recently published review and meta-
analysis show that CL/P negatively affects
HRQoL in children (2- to 18-year-olds) and
in adults (19- to 65-year-olds) mainly in
psychological health12.
The current understanding on HRQoL in
Swedish children with CL/P is sparse or might
lack because to our knowledge, only investi-
gations regarding Swedish adults and adoles-
cents are published. With early surgical
treatment and speech therapy, it is possible to
achieve a positive aesthetic outcome and an
optimal result of speech development4, but
the question is whether this also will give an
optimal HRQoL in children where social com-
petence and aesthetic physical appearance are
included? These latter factors are considered
important in today’s society.
This study had the unique possibility to
compare HRQoL in children with CL/P with
healthy children of the same ages and from
the same geographic area (south-east and
south-west Sweden). In order to compare
children with and without CL/P a generic
questionnaire and not a disease-specific ques-
tionnaire was used, KIDSCREEN-52, which
contains 10 dimensions of HRQoL: physical
well-being, psychological well-being, moods
and emotions, self-perceptions, autonomy,
parent relations and home life, social support
and peers, school environment, social accep-
tance, and financial resources.
The primary aim of this study was to inves-
tigate HRQoL in children with CL/P in
© 2016 BSPD, IAPD and John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
comparison with non-cleft controls in two
different age groups. The secondary aim was
to look for differences in HRQoL between
children with cleft lip with or without cleft
palate (CL
P) and cleft palate only (CP).
The final aim was to analyse whether there
were any gender differences. The null
hypothesis was that no difference in HRQoL
would be presented between children with
CL/P and non-cleft controls.
Material and methods
Design
This two-centre, cross-sectional, case–control
study was approved by the regional ethics
committee in Link€ oping (Dnr 2011/252-31
and Dnr 2012/304-32). Permission to utilize
the Swedish version of KIDSCREEN-52 was
granted by the copyright holder13.
Participants
This is one of some reports from a multidisci-
plinary collaboration of researchers studying
children with CL/P compared to healthy non-
cleft children in the same ages. In Sweden, all
children up to the age of 19 years have free
medical and dental care, including orthodon-
tic treatment. All children with CL/P are trea-
ted and followed up at 5, 10 and 19 years of
age, according to the Swedish National treat-
ment protocol. The two age groups, 5- and
10-year-olds, were chosen because we
wanted to study caries prevalence and fre-
quency in the primary and early mixed
dentition.
Children with CL/P. We invited all, also chil-
dren with different types of syndromes, 5-
and 10-year-old children with CL/P attending
two of the six regional cleft Centre’s in Swe-
den, Link€oping, and Gothenburg, to partici-
pate in the study. We had no external
exclusion criteria. The invited children were
born between October 2006 and December
2008 and between December 2001 and
December 2003, respectively. Written infor-
mation about the study was sent by mail
and/or given orally when the caregivers and

the children were visiting the cleft Centre.
Non-responders were recontacted by mail
and/or per telephone 2–4 weeks after the first
information. In total, 258 children of whom
56% were 5-year-old were invited. They rep-
resented 22% with cleft lip (CL), 25% with
cleft palate (CP), 34% with unilateral cleft lip
and palate (UCLP), and 19% with bilateral
cleft lip and palate (BCLP). Fifty-seven per
cent of the invited children were boys. A total
of 137 children (53% of all invited children),
of whom 78 (31 adopted/40%) aged 5 years
(median 5.3, range 4.3–6.7 years) and 59 (13
adopted/22%) aged 10 years (median 10.3,
range 9.2–11.8 years), agreed to participate.
The participating adopted children were
adopted in young ages (mean less than
2 years of age). Most of the adopted children
had primary lip surgery performed before
arrival to Sweden. The internal dropouts were
no parental response to the invitation
(n = 82), declined to consent including two
children who did not collaborated to dental
examination (n = 35), and unwillingness to
answer the questionnaire (n = 4). The group
with CL/P that did not agree to participate
(external dropouts) had less total frequency
(about 50%) of UCLP and BCLP in both age
groups. The 10-year-old children gave oral
consent, and all parents gave written consent
before answering the questionnaire. The
questionnaire was answered when the child
was visiting the dental clinic for a dental
examination14.
Non-cleft controls. Healthy control children of
the same age, from the same catchment area
and during the same time interval, were ran-
domly selected from the waiting list of six dif-
ferent public dental clinics from both the
countryside and cities. Identical examinations
were performed, and the same questionnaires
were answered as for the CL/P group. A total
of 313 children born between January 2007
and December 2008 and between January
2002 and December 2003, and their parents
agreed to participate. One child in each age
group was adopted. Eight children were
excluded because of unwillingness to answer
the questionnaire. One hundred and thirty-
seven 5-year-old children (median 5.2, range
© 2016 BSPD, IAPD and John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
HRQoL in CL/P children 3
4.2–6.9 years) and 168 10-year-old children
(median 10.1, range 9.2–11.8 years) were
included.
Questionnaire
HRQoL was estimated by the Swedish version
of KIDSCREEN-52, a worldwide generic used
questionnaire containing both a proxy ver-
sion for caregivers and a self-reported form
(for children between 8 and 18 years).
KIDSCREEN-52 was developed in an inter-
country collaboration network including 13
European countries. The questionnaire was
created after literature reviews, consultation
of experts, and discussions in focus groups
with children. Thereafter tested in representa-
tive studies together with health assessments
questionnaires13,15. The questions refer to the
children0 s HRQoL over the last week. The
questionnaire consists of 52 items measuring
10 dimensions of HRQoL: physical well-being,
psychological well-being, moods and emo-
tions, self-perception, autonomy, parent rela-
tions and home life, social support and peers,
school environment, social acceptance (bully-
ing), and financial resources. Each item is
scored on a 5-point Likert-type scale (1 = no
agreement at all, 5 = total agreement). Mean
HRQoL T-scores of 50 and SD
10 are
regarded as normal13. Higher values indicate
better HRQoL. KIDSCREEN-52 is applicable
for both healthy and chronically ill children,
and the instrument has acceptable reliability
(Pearson’s r = 0.58–0.78) and validity as well
as good internal consistency (Cronbach’s
a = 0.77–0.89)13,16.
Procedures. The questionnaires were adminis-
trated from May 2012 to January 2014. The
caregivers for the 5-year-old children
answered the proxy version, and the 10-year-
old children answered the self-reported form.
If the child or the parents did not understand
the questions, the questions were explained
by the dental assistant or the dentist. If the
child had low reading skills, his or her parent
or the dental assistant read the questions
aloud. The questionnaires were answered at
the dental clinic, in the examination room or
in the waiting room. A few parents/children
4 A. L. Sundell, C.-J. T€
ornhage & A. Marcusson

answered the questionnaires at home because Table 2. Distribution of gender and age in all 442
participants.
of their desire to shorten the visit.
5-year-olds 10-year-olds

Statistical analysis Non-cleft Non-cleft

CL/P controls CL/P controls
All data were processed using IBM SPSS
statistics 20 (Chicago, IL, USA). Following the Total 78 (36) 137 (64) 59 (26) 168 (74)
KIDSCREEN manual, Rasch measurement Boys 44 (37) 75 (63) 35 (36) 63 (64)
Girls 34 (36) 62 (64) 24 (19) 105 (81)
analysis was used for all dimensions, which Age 5.4 (0.5) 5.2 (0.3) 10.3 (0.9) 10.0 (0.7)
were thereafter transformed to T-values13.
Descriptive statistics for HRQoL are presented Values denote number, () per cent of subjects, mean age, and
as mean values and SD. A nonparametric test standard deviation (SD).

(Mann–Whitney U-test) was performed to

evaluate the difference between the CL/P Table 3. Distribution types of clefts in the CL/P groups.
group and the non-cleft control group and
5-year- 10-year-
between genders. A nonparametric test for olds olds
one-way ANOVA was used to analyse differ-
ences in HRQoL between children with n % n %

CL
P and children with CP and controls Cleft lip (CL) 18 23 9 15

(Kruskal–Wallis test). For all comparisons, the Cleft palate (CP) 11 14 18 31
correction for multiple tests was taken into Unilateral cleft lip and palate (UCL/P) 37 48 22 37
Bilateral cleft lip and palate (BCL/P) 12 15 10 17
account using Bonferroni correction. All sta-
Total CL/P 78 100 59 100
tistical tests were two-tailed and at the
P < 0.05 significance level. Values in the table denote (n) number and (x) per cent of sub-
jects.
The children’s cleft diagnoses were collected from their dental
Results records.

The children’s medical background, age, and Of the 442 participants, 9% had missing
gender and the distribution of cleft diagnoses information on one or more single KIDSC-
are presented in Tables 1–3. REEN items. The general HRQoL overall
Mean values and SD of the 10 dimensions mean T-value for 5-year-old children was
of KIDSCREEN-52 are presented in Table 4. 55.3 (SD
5.1) vs 57.0 (SD
6.4) for the 10-
Results in the tables are given for all children year-old children. There were no significant
(boys and girls). differences between the cleft and non-cleft
groups.
Table 1. Medical conditions in 137 children with CL/P and
305 non-cleft controls.
HRQoL in 5-year-old children
Non-cleft
CL/P controls Proxy-rated HRQoL in children did not differ
significantly in any dimension between the
n % n % two groups. No difference in HRQoL between
Asthma* 16 11.5 22 7
children with CL
P and children with CP.
Heart problems 2 1.5 5 1.5 Girls with CL/P had significantly higher scores
Epilepsy 0 – 3 1 in ‘moods and emotions’ in comparisons to
Diabetes 0 – 1 <1
ADHD 2 1.5 2 <1
the boys with CL/P, 56.5 (SD
8.1) vs 51.3
Autism 2 1.5 1 <1 (SD
8.1) respectively, (P = 0.02).
Post-traumatic stress syndrome 1 <1 0 –

The caregivers together with the child answered a questionnaire HRQoL in 10-year-old children
concerning the child’s medical background.
Values represent numbers of children and % of total values. Self-rated HRQoL in children did not differ
*There was no significant difference between the groups. significantly in any dimension between the

© 2016 BSPD, IAPD and John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
 HRQoL in CL/P children 5

Table 4. T-mean values for children with CL/P and non-cleft controls.

5-year-olds proxy-rated 10-year-olds self-rated

CL/P Non-cleft controls All children CL/P Non-cleft controls All children

Physical well-being 55.3 (9.4) 54.1 (8.0) 54.5 (8.5) 54.8 (8.4) 54.7 (9.1) 54.8 (8.9)
Psychological well-being 56.7 (8.8) 57.0 (7.9) 56.9 (8.2) 56.1 (9.2) 57.8 (7.9) 57.3 (8.3)
Moods and emotions 53.2 (7.9) 53.0 (7.7) 53.2 (7.9) 56.6 (10.8) 58.5 (10.2) 58.0 (10.3)
Self-perceptions 58.0 (9.7) 58.1 (9.5) 58.1 (9.5) 59.2 (10.4) 60.2 (9.4) 59.9 (9.7)
Autonomy 51.1 (6.9) 51.1 (7.6) 51.1 (6.9) 55.4 (9.1) 55.9 (8.9) 55.8 (9.0)
Parent relations and home life 53.7 (7.6) 54.9 (7.1) 54.5 (7.3) 55.8 (9.2) 56.1 (7.8) 55.4 (8.3)
Social support and peers 53.5 (7.7) 54.1 (7.1) 53.9 (7.3) 54.0 (9.4) 58.0 (9.6) 56.9 (9.7)
School environment 61.1 (10.3) 60.3 (8.8) 60.6 (9.3) 59.2 (10.6) 62.3 (9.6) 61.5 (9.9)
Social acceptance (bullying) 52.2 (8.3) 51.8 (9.2) 52.0 (8.9) 53.7 (8.4) 52.1 (10.0) 52.6 (9.6)
Financial resources 59.0 (6.8) 57.6 (7.7) 58.1 (7.4) 55.3 (8.0) 55.3 (7.7) 55.3 (7.8)

Values are given as mean (SD). All dimensions are estimated; no significant differences between CL/P and non-cleft controls are found.
Norm score mean is 50, and standard deviation is 10, KIDCREEN-52 (T-score), Ravens-Sieberer et al.13.

two groups. There was a tendency towards a
lower score in ‘social support and peers’ in
children with CL/P compared with non-cleft
controls. No difference was found in HRQoL
between children with CL
P and children
with CP. Additionally, no gender difference in
HRQoL could be found.
Discussion
This study investigates HRQoL in a cohort
with 5- and 10-year-old Swedish children
with CL/P compared to non-cleft controls in
the same ages. To assess HRQoL, we used
the generic worldwide used questionnaire
KIDSCREEN-52, available in both proxy and
self-reported forms, suitable for our primary
aim.
In both 5- and 10-year-old children, there
were no differences in HRQoL between chil-
dren with CL/P and non-cleft controls. There-
fore, the null hypothesis could not be rejected.
Our results confirmed earlier studies that chil-
dren with CL/P have as good and similar
HRQoL as children without a cleft10,11,17. Indi-
viduals with a cleft are well adjusted and able
to cope with the special challenges they
encounter living with a cleft6,18,19.
Ten-year-old children with CL/P perceive
their HRQoL lower, in the dimension ‘social
support and peers’ than non-cleft controls.
This can be interpreted as children with a
CL/P feel less acceptance and support by
peers, have less ability to form and maintain
relationships, are less respected by peers and
friends, have less experiences of positive
group feeling, and feel less a part of a group
than non-cleft controls13. Facial appearance,
acceptance by peers, and the desire to be like
everyone else are important to pre-
adolescents20–22. Questions and comments
about the children’s cleft from other children
may result in children with a cleft feeling dif-
ferent21. Furthermore, the frequent hyper-
nasal speech in children with a cleft palate4
and aberrant facial appearance in children
with CL
P can be perceived negatively by
other children23,24. As expected, social com-
petence and aesthetic physical outcomes
appearance are more essential in 10-year-old
children with CL/P compared to 5-year-olds.
In accordance with our result, previous stud-
ies measuring oral HRQoL have shown that
children with cleft perceive their HRQoL
lower in social–emotional well-being than
controls9,25. There was no difference between
HRQoL dimension 0 social support and peers0
in 5-year-old children with CL/P compared to
non-cleft controls. Maybe, this could be
explained by the fact that HRQoL were per-
ceived by the children’s parents and not by
the children themselves, such as in the 10-
year-olds. Another explanation can be the
younger age itself. During early childhood,
children with CL/P are not aware that they
are unalike other children, having a congeni-
tal malformation causing aberrations in facial
appearance and/or speech deviations22. Later

© 2016 BSPD, IAPD and John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
6 A. L. Sundell, C.-J. T€
ornhage & A. Marcusson
in childhood, they become aware of the cleft
and feel dissimilar due to their appearance,
speech impairment, and that they are differ-
ent because they need multiple and some-
times extensive medical and dental
22
treatments , in agreement with our results;
however, our lower scores in the dimension
0
social support and peers0 in 10-year-old chil-
dren with CL/P were not statistically signifi-
cant but it could be of clinical importance.
Our secondary aim, look for differences in
HRQoL between children with CL
P and
children with CP, did not reveal any inconsis-
tency between the two groups. The null
hypothesis was rejected. This is in agreement
with an earlier study by Feragen et al.2 show-
ing that CL
P is not a risk factor for psy-
chological problems but a risk factor for
dissatisfaction with appearance2. Marcusson
et al.6 and Damiano et al.20 have shown that
aesthetic concerns seem to be important fac-
tors affecting HRQoL in adults and children.
The result in this study was not expected
because we assumed that aesthetic physical
appearance is more important in today’s soci-
ety where social media, such as social net-
working sites and blogs, are important parts
in youngster’s social daily life.
Other consequences are communications
disabilities. Children with CP have often
speech impairment4 and hearing impairment5
that can affect their social competence due to
their difficulties in communication with
others. In addition to aesthetic concerns also
speech concerns seems to influence HRQoL in
children with CL/P20. Difficulties in both
CL
P and CP may be the reason why no
difference between the groups of children0 s
HRQoL was detected.
Our final aim, gender differences, discov-
ered differences in children with CL/P. Five-
year-old girls with CL/P scored higher in the
dimension ‘moods and emotions’ in compar-
ison with boys. According to handbook in the
KIDSREEN questionnaires13, these can be
interpreted as girls feel good and are in a
good mood more than boys. A similar gender
difference in the subscale ‘emotional role’ has
been reported in adults by Mani et al.7,
although there are also studies in children
without gender differences3,11.
© 2016 BSPD, IAPD and John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
As a group, all children in this study had
similar HRQoL compared with children in the
general European population in all dimen-
sions reported by Ravens-Sieberer13,16. There
was an individual difference in T-values
between different dimensions. The T-values
range span was 3–74 and with a skewness of
rating higher HRQoL. The participating 10-
year-old children in our study seemed to
have even better HRQoL with overall mean
T-value at 57.0 compared with 52.4 in 11- to
12-year-old schoolchildren in Svedberg et al.’s
study using the same KIDSCREEN-52 ques-
tionnaire26. In that study26, the authors also
analysed the frequency of psychosomatic
symptoms with a validated scale (PSP, Psy-
chosomatic Problem scale)27. They found that
the occurrence of psychosomatic symptoms
could explain (effect size) between 27 and
50% of the HRQoL score. We did not esti-
mate the frequency of psychosomatic symp-
toms. The explanation for the difference
between Svedberg et al.’s study and this study
is not obvious. In the life span of 10–12 years
studied, the pre-pubertal period, children are
calm and not disturbed by different hormones
and rapid growth, so the psychosomatic
symptom score ought to be the same in both
groups.
The high external dropout of invited chil-
dren with CL/P of about 50% is a limitation.
We can only speculate what the reason was.
Perhaps, parents and children with CL/P and
low HRQoL do not have the energy, motiva-
tion, or interest to participate.
The children’s medical background, except
for the cleft diagnosis, was described by the
parents. This is a limitation because parents
may have overlooked to give all relevant
information, such as syndrome diagnosis,
which can influence HRQoL. Syndromes are
uncommon and syndromes including cleft
diagnosis are even rarer28. All children with
CL/P attending two regional cleft Centre0 s
were invited to participate in this study. We
excluded two children who could not collabo-
rated to dental examination, and they both
had a complex medical background, analo-
gous with rare syndromes. There might be
some children with syndromes included in
the study but if any they are truly very few

and have most likely not strongly influenced
the result.
In HRQoL studies, physical dimensions are
often better correlated between proxy raters
and patients compared to psychosocial dimen-
sions29. The psychosocial dimensions are only
guesses from the proxies how the children/
patients are feeling. The concrete and objec-
tive aspects are easier to answer for proxies,
as the dimension physical well-being in
KIDSCREEN-52. Comparisons of answers to
KIDSCREEN-52 between children and parents
have been performed and have shown an
acceptable agreement between children and
parents with item intraclass correlation coeffi-
cient (ICC) ranging from 0.45 for the dimen-
sion ‘moods and emotions’ and 0.62 for the
dimensions 0 physical well-being’ and 0 school
environment0 13. In HRQoL studies, proxies
tend to report more HRQoL problems than
patients themselves, but the extent is often
modest29. In 8- to 18-year-old Norwegian
children, parents rated their children’s HRQoL
(measured with KIDSCREEN-52) lower in the
dimensions 0 psychological well-being0 , 0 par-
ents relations0 , 0 social support and peers0 and
higher in the dimensions 0 physical well-
being0 , 0 self-perception0 , 0 autonomy0 , 0 financial
resources0 , and 0 school environment0 , than
their children30. In older children, the differ-
ence was larger than in the younger ages. We
can only speculate if parents to the 5-year-old
children in this study report more or less
HRQoL problems in their children compared
to the children themselves. It is hoped that
the difference was small as the children were
young.
The results in the 5-year-old groups must
be understood, however, as the parents’
knowledge of their children’s satisfaction with
life. This limits the possibility to exact com-
pare results from the 5- and 10-year-old
groups. But if you cannot ask the children
themselves, you have to choose someone
else.
The proportions of boys versus girls in the
participating children with CL/P are almost
the same as in the invited children with
CL/P. This fact can give the possibility to gener-
alize our results to the whole invited cohort.
There was a small internal dropout of 9%.
© 2016 BSPD, IAPD and John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
HRQoL in CL/P children 7
A future follow-up of this study would dee-
pen our understanding if this multidisciplinary
treatment will change HRQoL over time.
In summary, first, HRQoL as measured by
KIDSCREEN-52 was similar in Swedish chil-
dren with CL/P and their non-cleft controls
and comparable to a European norm popula-
tion with both healthy and non-healthy chil-
dren13. Secondary, CL
P compared to CP
had no impact on HRQoL, and there was no
considerable difference in HRQoL between the
genders. In contrast, 10-year-old children with
CL/P had feeling of more exclusion and less
support or acceptance by peers in the social
dimension. Finally, it is optimistic that HRQoL
did not differ between children with and with-
out a CL/P, despite the objective or perceived
importance of social acceptance and aesthetic
physical appearance in today’s society.
Why this paper is important to paediatric dentists
• Paediatric dentists should be aware of that 5- and 10-
year-old children with CL/P have normal HRQoL and
are well adjusted to their clefts.
• In contrast, 10-year-old children with CL/P feel more
excluded and less supported or accepted by peers.
Acknowledgements
The authors wish to thank all children and
parents participating in the study. Special
thanks go to Lucja Malko for her diligence in
contacting parents and children. We would
also like to thank Svante Twetman for con-
tributing to the study design and Christer Ull-
bro for contributing to the study design and
for valuable comments regarding the manu-
script development. Also, thanks for the
reviews and valuable comments regarding the
manuscript.
Conflict of interest
The authors declare that they have no com-
peting interests.
Funding
This work was supported by Region
J€
onk€
oping County, Medical Research Council
8 A. L. Sundell, C.-J. T€
ornhage & A. Marcusson
of Southeast Sweden (FORSS), Academy for
Health and Care Region J€ onk€oping County
(Futurum), the Swedish Dental Association,
and the Swedish Society of Paediatric Den-
tistry (SSPD). Any opinions, findings, conclu-
sions, or recommendations expressed here are
those of the authors and do not necessarily
reflect the views of the funders. These agen-
cies/funders had no further role in the study
design; in the collection, analysis, and inter-
pretation of the data; in writing the report; or
in the decision to submit the paper for
publication.
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