Indexed and abstracted in Science Citation Index Expanded and in Journal Citation Reports/Science Edition
Bratisl Med J 2017; 118 (6)
Impact of cleft lip and/or palate in children on family quality
of life before and after reconstructive surgery
Macho P, Bohac M, Fedeles J Jr, Fekiacova D, Fedeles J Sr
Clinic for Plastic, Aesthetic and Reconstructive Surgery Medical Faculty, Comenius University Hospital,
Bratislava, Slovakia. email@example.com
BACKGROUND: The aim of the study was to evaluate the impact of cleft lip/palate children together with con-
sequent treatment on quality of family life using standardized questionnaire. Different to previous studies the
evaluation of quality of family life by questionnaire was realized twice in the same group of families (before the
reconstructive surgery and several months after palatoplasty).
METHODS: The study was conducted in 40 families divided in two groups: 20 families with children with cleft lip
(CL), 20 families with children with cleft lip and palate (CLP). The questionnaire of the Impact on Family Scale
was used for evaluation of the inﬂ uence of orofacial clefts on parent´s quality of life. Evaluations were made at
the second month of child´s life and at one year of child´s life with reciprocally comparison.
RESULTS: The higher impact of children with CLP on quality of family life was noted at 2 months and 1 year
of child’s age as compared to the impact of children with CL. The reduction of impact on quality of life after
surgical correction was observed in families of children with CL at one year of child’s age. This decrease of
inﬂ uence on family quality of life was due to signiﬁ cantly lower impact in strain and economic dimensions in
families with CL children after operation. However, in the group of families with CLP children no signiﬁ cant
changes in the impact on family quality of life were noted when compared to the values before and shortly after
the reconstructive surgery.
CONCLUSIONS: This study showed that orofacial clefts in children inﬂ uence markedly the quality of their family
life. The higher impact of children with CLP on quality of family life as compared to children with CL was noted
and this impact in CLP group was not inﬂ uenced shortly after reconstructive surgery. It is suggested that ap-
propriate medical care in Cleft Centre with special psychological support may lead to improvement in quality of
life for families with cleft lip and palate children (Tab. 2, Fig. 2, Ref. 14). Text in PDF www.elis.sk.
KEY WORDS: cleft lip, cleft palate, quality of life, the impact in family scale.
Clinic for Plastic, Aesthetic and Reconstructive Surgery Medical Faculty,
Comenius University Hospital, Bratislava, Slovakia
Address for correspondence: P. Macho, MD, Clinic for Plastic, Aesthetic
and Reconstructive Surgery Medical Faculty, Comenius University Hospi-
tal, Bratislava, Ruzinovska 6, SK-826 06, Bratislava, Slovakia.
The increasing attention in medical care is focused on the
studies of impact of chronic illness and disability in children on
family life (1, 2, 3, 4, 5). Cleft of lip and palate is one of the most
common congenital craniofacial malformation that may impose a
large burden on the psycho-socio-economic well-being of the af-
fected individuals and their families (6, 7, 8). Newborns with cleft
lip or cleft lip with palate have acquired stigmatized face, what
leads parents to new challenge, which has to be overcome. Whole
after-birth period together with post-operation phase impacts the
patient´s quality of life and mainly inﬂ uences their parents (6, 7, 9,
10). However, the number of clinical studies evaluating the impact
of children with cleft lip/palate on the family life is relatively small
(6, 7, 9, 10, 11). This was the reason for realization of this study
evaluating the quality of life in parents of children registered in
our Cleft Centre. The aim of the study was to evaluate the impact
of cleft lip/palate children together with consequent treatment on
quality of family life using standardized questionnaire. Different
from previous studies (9, 10, 11), the evaluation of quality of fam-
ily life by questionnaire was realized twice in the same groups of
families. The ﬁ rst questionnaire was ﬁ lled out the second month
of children´s life (before the operation), the second questionnaire
was ﬁ lled out after reconstructive surgery at the time of the ﬁ rst
year of child´s age.
Patients and method
Patients with cleft lip (CL) or with cleft lip and palate (CLP),
who were treated in Cleft Centre at the Clinic for Plastic Surgery,
Comenius University Hospital, Bratislava and their families were
included in this study. Inclusion criteria for entry the prospective 5
years running study were fulﬁ lled by 40 families, and these fami-
lies were divided in two equal groups. The ﬁ rst group included
20 families with children affected by cleft lip only. The second
group included equally 20 families with children with cleft lip and
palate. Lip correction was realized in the third month of patient´s
life. In case of need (for cleft lip and palate children), the palate
Macho P et al. Impact of cleft lip and/or palate in children on family quality of life…
closure was realized at the sixth month of patient´s life. All pro-
cedures were performed according to operation protocol valid in
our Cleft Centre. The informed consent was obtained from all
The impact on family scale questionnaire (12) was used for
evaluating the impact of cleft lip/palate and following operative
treatment on the quality of parent´s life. The questionnaire was
ﬁ lled ﬁ rst time at the second month of child´s age (before the op-
eration), than the second questionnaire with the same questions at
the age of one year of affected child with correlative comparison.
The questionnaire involves 27 questions with one of four possi-
ble answers in points (high impact 4 points – low impact 1 point)
and the degree of impact on family was quantiﬁ ed by reached
points. Four dimensions in the questionnaire were marked as the
most important and analyzed: economic (changes in the family´s
economic status, 6 items), social (the quality and quantity of in-
teraction with other persons outside the family, 4 items), familial
(quality of interaction within the family unit, 7 items) and strain
(subjective burden experienced by the primary caretaker, 10 items).
The data were analyzed using statistical t-test method and SPSS
software version 10.0.
The comparison of averages of total points in the group of
families of children with cleft lip only to the group of patients with
cleft lip and palate showed higher impact of combined cleft lip and
palate on family life (Tab. 1). The differences were signiﬁ cant at
2 months and also at 1 year of children age. The signiﬁ cant de-
crease of the average of total points (11.5 %) (p < 0.05) was noted
in the families of children with CL after reconstructive surgery
at the age of one year (Tab. 1). However no signiﬁ cant changes
in impact on family life were noted in the group of children with
CLP after the operation.
The average scores of impact on family life in economic and
social dimensions in the questionnaire were lower in comparison
to familial and strain dimensions in both CL (Fig. 1) and CLP
groups (Fig. 2) at 2 months and also at 1 year of child’s age. Sig-
niﬁ cant decrease in average of score points in strain dimension
(anxiety feelings) on quality of life was observed in families with
CL children after operations (Fig. 1, 15.9 % decrease, p < 0.001).
However, the score in other dimensions (social, familial) decreased
only slightly and improvement of the quality of life was not sig-
niﬁ cant. There were no signiﬁ cant differences in average values
of the score of points in economic, social, familial and strain di-
mensions before and after the surgery in families with children
with cleft lip and palate (Fig. 2).
The average of number of points in response to individual
items of questionnaire in the four dimensions showed that there
are differences in the impact of dimensions on quality of life in
Number of values 20 20 20 20
MEAN±SE 56.9±2.93 50.9±2.83* 64.9±2.81‡ 62.0±3.06‡
Median 55.5 47.0 62.0 60.5
25% percentil 48.0 44.0 57.0 48.0
75% percentil 64.8 53.8 70.0 72.0
CL – families with children with cleft lip, CLP– families with children with cleft lip
and palate 2 months, 1 year – the age of children at the collection of questionnaire.
Statistical signiﬁ cance of differences: *CL 2 months: CL 1 year p ≤ 0.05, ‡ CL
group: CLP group p ≤ 0.05
Tab. 1. Mean values of total points and medians from Impact on family
Group CL CLP
2 months 1 year 2 months 1 year
Economic 6 1.55±0.09 1.35±0.07* 2.07±0.11§§ 1.91±0.10§
Social 4 1.45±0.05 1.26±0.06 1.9 3±0.12§ 1.60±0.10*
Familial 7 2.91±0.11 2.81±0.11 3.08±0.10 3.03±0.10
Strain 10 2.13±0.08 1.80±0.06** 2.31±0.08 2.28±0.08§
CL – families with cleft lip children, CLP – families with children with cleft lip
and palate 2 months, 1 year – the age of children. Statistical signiﬁ cance of dif-
ferences between groups: 2 months: 1 year * p ≤ 0.05, ** p ≤ 0.01, CL – CLP § p ≤ 0.05
§§ p ≤ 0.01
Tab. 2. Mean values of points from individual items in dimensions of
impact of familiy scale questionnaire.
Fig. 1. The average score of points of impact of family scale question-
naire in economic, social, family and strain dimensions of families
with children with cleft lip. A – 2 months, B – 1 year of age of children
with orofacial defect.
Fig. 2. The average score of points of impact of family scale question-
naire in economic, social, family and strain dimensions in families with
children with cleft lip and palate. A – 2 months, B – 1 year of age of
children with orofacial defect.
Bratisl Med J 2017; 118 (6)
families of children with CL or CLP. Higher impacts of familial
and strain dimensions were noted in all groups as compared to
economic (ﬁ nancial) and social dimensions (Tab. 2). In fami-
lies having children with CLP higher impact of economic and
social dimensions in comparison to CL was observed at the age
of children of 2 months and also 1 year (Tab. 2). The signiﬁ cant
difference between CL and CLP groups was also noted in strain
dimensions in children 1 year of age, mainly due to decrease of
impact on quality of life in CL group after reconstructive surgery
in children (Tab. 2).
The detailed knowledge of impacts inﬂ uencing the quality of
life in families having children with clef lips or clef lift and palate
might support affected families in coping with the particular situ-
ation and providing adequate care for the patients (6). Most of the
previous studies on the effects of oral clefts in children on quality
of life of families have been conducted at different ages with dif-
ferent groups of children and at various periods after palatoplasty
(9, 10, 11, 13, 14). There were no observations on the impact of
orofacial defects in children on the quality of family life before
the operation, thus it was not possible to evaluate the effects of
reconstructive operations. Results of our ﬁ ve years long running
prospective study show evaluation of the impact of cleft lip/palate
in children on parent´s quality of life during the ﬁ rst two months
of child’s life (before the operation) and also at the end of ﬁ rst
year (after reconstructive surgery). This made it possible to com-
pare the immediate effects of reconstructive surgery of clefts on
quality of family life. In the contrary to our expectation the results
revealed low impact of orofacial cleft of children on social inter-
actions and economic burden of family, but very high inﬂ uence
on family interactions and strain.
The results of our observations during the early period of life
of children with oral clefts showed differences in the impact of
various dimensions of life in families with CL or CLP on quality
of family life. The economic impact was represented by increased
costs for frequent visits for out-patient examinations, (the need for
operative correction at three months and subsequent controls), the
stop in work due to care for a child, causing ﬁ nancial problems
for family. The impact of economic dimension on quality of life
in our study was not so high as compared to familial and strain
dimensions. This is due to the fact that in Slovakia the maternity
leave takes three years, so the feeling of losing the work for the
need of taking care of children has only a low impact.
Social interactions with other people for parents with affected
child represent a low impact on quality of life. The mean values of
points in social dimension showed the higher impact in CLP group
as compared to CL. These results are in agreement with observa-
tions of Kramer et al (9), who described that families with older
children with CL had smaller reduction in family functioning than
families with children with CLP or CP.
The most impacted dimensions inﬂ uenced by the child´s dis-
ease were interactions inside the family (represented by the feeling
of tightening of the relationship in the family, the need for com-
munication with partner, the feeling of having not enough time
for other members in the family, making the effort for treating the
child as a healthy one). The score of impact in this familial dimen-
sion was not inﬂ uenced by reconstructive surgery of the defects
after this short period after operation.
The strain (subjective feeling of burden, fatigue for carry for
the child, a worry what happens to the child in the future, interfer-
ence with relatives) is a dimension also with high inﬂ uence on the
quality of parent´s life. Many times strain is presented as feelings
not being understood by other people, worries about future, feel-
ing of instability in life in crisis when the child is ill, carelessness
when things go allright. However, in this dimension a signiﬁ cant
improvement was noted after one year in CL group as compared
to the impact of cleft in child before the operation. In families with
children with CLP no signiﬁ cant changes in the impact on quality
of family life of this dimension were noted at short period after
CLP reconstruction. It seems reasonable that longer period after
operation in CLP children is necessary to observe also a decrease
of impact on quality of life in strain dimension.
In conclusions our prospective study showed, that clefts in
children inﬂ uence markedly the quality of their family life. The
higher impact of combined cleft lip and palate of children on
quality of family life was noted as compared to the inﬂ uence of
children only with cleft lip. A signiﬁ cant decrease of impact in
strain and economic dimensions after reconstructive operation ap-
peared in families of children with cleft lip. However, no changes
in impact on family life after operation were noted in families
of children with cleft and palate. It is suggested that appropriate
medical care in Cleft Centre with special psychological support
may lead to improvement in quality of life for families with cleft
lip and palate children.
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Received January 20, 2017.
Accepted February 15, 2017.