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Impact of cleft lip and/or palate in children on family quality of life before and after reconstructive surgery

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Abstract

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 influence 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 influence on family quality of life was due to significantly lower impact in strain and economic dimensions in families with CL children after operation. However, in the group of families with CLP children no significant 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 influence 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 influenced 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. 
Indexed and abstracted in Science Citation Index Expanded and in Journal Citation Reports/Science Edition
Bratisl Med J 2017; 118 (6)
370373
DOI: 10.4149/BLL_2017_070
CLINICAL STUDY
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. machopaloo@yahoo.com
ABSTRACT
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 in 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
in uence on family quality of life was due to signi 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 signi 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 in 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 in 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.
Introduction
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 in 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 rst questionnaire was lled out the second month
of children´s life (before the operation), the second questionnaire
was lled out after reconstructive surgery at the time of the 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 ful lled by 40 families, and these fami-
lies were divided in two equal groups. The 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…
xx
371
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
participating families.
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
lled 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 quanti 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.
Results
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 signi cant at
2 months and also at 1 year of children age. The signi 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 signi 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-
ni 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-
ni cant. There were no signi 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
Group CL
2 months
CL
1 year
CLP
2 months
CLP
1 year
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 signi 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
scale questionnaire.
Group CL CLP
2 months 1 year 2 months 1 year
Dimension items
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 signi 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)
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372
families of children with CL or CLP. Higher impacts of familial
and strain dimensions were noted in all groups as compared to
economic ( 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 signi 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).
Discussion
The detailed knowledge of impacts in 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 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 rst two months
of child’s life (before the operation) and also at the end of 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 in 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 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 in 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 in 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 in 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 signi 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 signi 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 in 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 in uence of
children only with cleft lip. A signi 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.
... Several studies in different age-groups have stated that CL/P has a significant impact on the health-related quality of life (HRQoL; Locker et al., 2005;Broder et al., 2012;Ward et al., 2013;Queiroz et al., 2015). However, few studies exist in infants about the possible influence of the surgical treatment of the CL/P on the HRQoL (Emeka et al., 2017;Macho et al., 2017). The primary surgical treatment of CL/P is a common procedure that involves primary surgical repair of the CL/P (Hodgkinson et al., 2005;Farronato et al., 2014) and according to the clinical practice guide for the diagnosis and treatment of CL/P of the Instituto Nacional de Salud del Nin˜o (INSN) San Borja-Peru (2017). ...
... Akinmoladun and Obimakinde (2009) reported that both mothers and fathers placed CL/P surgery as a major concern after receiving the diagnosis. It is suggested that adequate medical care with special psychological support can improve the quality of life of families with children with CL/P (Belucci & Genaro, 2016;Macho et al., 2017). It should be mentioned that the studies found are mostly aimed at evaluating the quality of life related to health (HRQoL) according to the perception of the family and the self-perception of the individual with CL/P, so in this study it was suggested to apply for first time the P-ECOHIS, validated in the Peruvian population, which assesses the impact of OHR-QoL in children younger than 5 years, through 2 sections, one concerning the impact in the child and the other impact in the family, with a more complete vision and integrating both basic nuclei of the family (Fernandes et al., 2017;Zeraatkar et al., 2018;Sawai et al., 2020). ...
... This could be due to more severe functional limitations in patients with CP or CLP who require additional medical attention, such as orthodontics or speech therapy. Macho et al. (2017) reported a greater impact of CLP compared to the influence of children with only CL. Abbreviations: CL/P, cleft lip and/or palate; IR, interquartil range; SD, standard deviation; SE, standardized effect sizes (baseline and 12th month of follow-up); mean score change: mean of the difference between scores of the baseline and 12th month of follow-up; P-ECOHIS, Peruvian version of the Early Childhood Oral Health Impact Scale. ...
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Objective To assess oral health-related quality of life (OHRQoL) changes before and after the primary surgical treatment in infants with cleft lip and/or palate (CL/P). Design Quasi-experimental study. Methods A total of 106 infants with CL/P younger than 2 years undergoing primary surgical treatment in the Plastic Surgery Service of the Instituto Nacional de Salud del Niño in Peru. The parent/caregiver answered a questionnaire about OHRQoL named the Peruvian version of the Early Childhood Oral Health Impact Scale (P-ECOHIS) in the pretreatment (baseline) and follow-up post-treatment. The total score of P-ECOHIS and their 2 sections (child impact and family impact) in the baseline and each follow-up period post-treatment scores were assessed. As well as, the type of the CL/P on OHRQoL, standardized effect sizes (ES) based on mean total change scores (difference between baseline and 12th month) were analyzed. Results Improvements in infant’s OHRQoL after treatment were reflected in each follow-up period P-ECOHIS score compared to the baseline score. The total P-ECOHIS scores decreased significantly from 28.07 (baseline) to 7.7 (12th month; P < .0001), as did the individual domain scores ( P < .0001). There were significant differences in the baseline and follow-up post-treatment scores of infants who reported improvement of the OHRQoL ( P < .0001). The ES was large (3.79). The cleft lip had an improvement in the OHRQoL at 12th month post-treatment ( P < .0001). Conclusions Primary surgical post-treatment resulted in significant improvement of the infant’s OHRQoL with CL/P.
... While generally not in the range of clinical distress, research has indicated that parents of children with CL/P may be more likely than the general population to experience parenting stress (Boztepe et al., 2020;Stock et al., 2020), as well as symptoms of post-traumatic stress (Despars et al., 2011) and postpartum depression (Grollemund et al., 2020). Further, parenting a child with CL/P can affect overall familial quality of life (QoL; Antunes et al., 2014;Macho et al., 2017;Emeka et al., 2017). The first year of the child's life, particularly around the time of primary surgery, can be an especially demanding and stressful time for new parents de Cuyper et al., 2019;Nur Yilmaz et al., 2019). ...
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We describe the case of a 32-year-old man with repaired cleft lip complaining of sexual difficulties, which were determined to be multifactorial in origin. A negative body impression, anatomical difficulty in engaging in sexual acts, the indirect impact of secondary complications of cleft lip, and the negative perception of his dysmorphia from potential sexual partners led to his current state. Cleft lip and palate (CLP) are the most common malformations of the craniofacial region. The malformations of anatomical structures involved in CLP can manifest through several variations of clinical features and phenotypes, typically affecting hearing, social integration, speech, and feeding. From birth to the end of growth, a multidisciplinary approach involving orthodontists, speech therapists, psychologists, and social workers is essential for adequate management, even after surgical repair. This case report illustrates the critical importance of the functionality of normal lips essential for sexual function and psychosocial issues encountered in a patient with repaired cleft lip, as this issue likely has a higher prevalence than the literature actually suggests. Adding a psychiatrist on the panel for pediatric reconstructive surgery teams and post-repair rehabilitation would be essential to managing potential sexual and psychological issues into adulthood.
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Craniofacial development comprises a complex process in humans in which failures or disturbances frequently lead to congenital anomalies. Cleft lip with/without palate (CL/P) is a common congenital anomaly that occurs due to variations in craniofacial development genes, and may occur as part of a syndrome, or more commonly in isolated forms (non-syndromic). The etiology of CL/P is multifactorial with genes, environmental factors, and their potential interactions contributing to the condition. Rehabilitation of CL/P patients requires a multidisciplinary team to perform the multiple surgical, dental, and psychological interventions required throughout the patient's life. Despite progress, lip/palatal reconstruction is still a major treatment challenge. Genetic mutations and polymorphisms in several genes, including extracellular matrix (ECM) genes, soluble factors, and enzymes responsible for ECM remodeling (e.g., metalloproteinases), have been suggested to play a role in the etiology of CL/P; hence, these may be considered likely targets for the development of new preventive and/or therapeutic strategies. In this context, investigations are being conducted on new therapeutic approaches based on tissue bioengineering, associating stem cells with biomaterials, signaling molecules, and innovative technologies. In this review, we discuss the role of genes involved in ECM composition and remodeling during secondary palate formation and pathogenesis and genetic etiology of CL/P. We also discuss potential therapeutic approaches using bioactive molecules and principles of tissue bioengineering for state-of-the-art CL/P repair and palatal reconstruction.
Background: Cleft lip and/or palate (CL/CP/CLP) is one of the most common congenital anomalies. Children may suffer from a variety of health problems including difficulties with feeding and speech, middle ear problems, hearing loss and associated psychosocial concerns. The extent of impact of this disorder on the parents, however, has not yet been thoroughly evaluated. This pilot study was performed to evaluate the impact of having a child with CL/CP/CLP on the parents' quality of life (QoL) and family functioning and to compare between cleft subgroups. Methods: Forty-five parents with children aged 6 months to 6 years with CL/CP/CLP, followed by the multidisciplinary orofacial cleft team of Ghent University Hospital, completed following standardized questionnaires: Impact on Family Scale (IOFS), Family Impact Scale (FIS) and Care-Related Quality of Life Instrument (CarerQoL). Subgroups were compared with diverse unpaired statistical tests. Results: Younger children (6m-2y) with CL/CP/CLP entail more impact on parental QoL compared to children aged 2-4y old (p=0.04, ε²=0.15/p=0.02, ε²=0.17/p=0.02, ε²=0.17). Families from children with a syndromic cleft also encounter more impact (p=0.04, r=0.32 /p=0.01, r=0.37 /p=0.008, r=0.40/p=0.003, r=0.45). Prenatal orofacial cleft diagnosis is associated with a higher reporting of family conflicts (p=0.04, r=0.32). In case of non-syndromic clefts, families having children with CLP report more family conflicts compared to CL or CP (p=0.02, ε²=0.46). Parental education and number of children within the household showed no significant impact on parental QoL. Conclusion: This cross-sectional study confirms that having a child with CL/CP/CLP impacts the parental QoL. This study was performed as a pilot-study for larger multicentre studies, future development of effective screening tools and identification of subgroups at risk. Long-term multidisciplinary follow-up should involve family-centred support.
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Objective: This study was designed to identify variables affecting family functions and life quality of parents with cleft lip and/or palate children. Materials and methods: Family Assesment Scale (FAS) and short form of World Health Organization quality of life (WHOQOL-BREF-TR) were used to measure family functions and life quality of parents. Questionnaire Forms were given to 146 parents: 74 having cleft lip and/or palate children (cleft-group), and the other 72 with healthy children (control-group). Parents were divided into 3 subgroups according to children's age as 0 to 6, 7 to 12, and 13 to 18 years. Kruskal-Wallis and Mann-Whitney U tests were used to evaluate differences between the groups. Results: Behavior of cleft patients' parents was found to be problematic in behavioral control, required attention and role areas at 0 to 6 years, required attention area at ages 7 to 12 and 13 to 18 years. When compared to control group, significant differences were detected in required attention at ages 0 to 6 years, problem-solving, and communication areas at 7 to 12 years. Findings of life quality were found to be over medium level in physical, social, psychological and environmental areas in cleft group at all age groups; however, life quality was found better in control group in physical, psychological, and social subtests at age 13 to 18 years. Conclusion: Cleft children influence family functions in behavioral control, required attention and role areas at early childhood, and continue to affect required attention through adolescence. Also social, physical, and psychological fields of life quality were found lower in cleft parents compared to control group at adolescence.
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The purpose of this study is to better understand the differential impact of specific diagnoses on outcomes in families with children who have physical disabilities and to suggest ways in which clinicians across disciplines can use that knowledge to develop and implement more individualized, evidence-based programs. Descriptive statistics, correlation, and a univariate analysis of variance (ANOVA) were used to analyze data gathered from a sample of 205 parents or guardians of children with physical disabilities. Findings revealed a modest effect of diagnosis type on five family outcomes. These outcomes included: (1) how parents or guardians rated their child's current health compared to 1 year before the study, (2) the degree to which the child's physical health caused worry, (3) the degree to which the child's emotional well-being or behavior caused worry, (4) the degree to which the child's health or behavior limited types of family activities, and (5) the degree to which the child'shealth or behavior interrupted family activities. This article presents an interprofessional model of response.
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The aim of this study was to investigate the prevalence of orofacial clefts (OC) in live newborns from 2001 to 2007 in Western Slovakia and correlate their occurrence with a number of relevant seasonal and geographical factors and epidemiological trend of this condition. In this study we used retrospective active survey collecting clinical data of 220 children with OC registered and operated at the cleft centre in Bratislava. Our study group included 67 patients from Bratislava region and 151 patients from the remaining Western Slovakia (Nitra, Trnava, Trenčín regions). Data of live births was obtained from Health Statistics of the Slovak Republic. Total incidence (TI) of 1.49/1000 live births (LB) in the region of Western Slovakia in 2001-2007 marked a decrease of prevalence compared to 1.64/1000 LB in the years 1985-2000. Bratislava region dominated in total prevalence of 1.82/1000 LB compared to the rest of Western Slovakia regions with 1.37/1000 LB. Most observed cleft type was the CP with 38.6 % frequency, followed by CLP with 35.5 % and CL with a frequency of 24.1 %. The frequency of AM with 1.82 % was the lowest. The results showed that the frequency risk rate of a birth of a child with OC was 1 to 671 LB in Western Slovakia. The data proved a higher prevalence of OC in Bratislava region with 1 child with this type of congenital anomaly to 549 LB compared with 1 child with OC to 730 LB in the rest of the Western Slovakia regions (Tab. 7, Ref. 16).
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The evaluation of instruments measuring oral health-related quality of life (OHRQoL) of children has been largely among convenience samples of patients with specific diseases or disorders such as cleft lip/cleft palate or malocclusion. This study aimed to evaluate the consistency and validity of the recently developed Child Perception Questionnaires (CPQ(8-10) and CPQ(11-14)) and the corresponding Parental Perception Questionnaire (PPQ) in a general child population sample in South Australia. The study was nested in the Child Oral Health Study. Some 1401 children aged 8 to 13 in 2002/03 were approached. Children were asked to complete the CPQ(8-10) and CPQ(11-14) according to their age while parents completed the PPQ. The questionnaires included global ratings of oral health and overall well-being. Scores for four domains (oral symptoms, functional limitations, emotional well-being and social well-being) were calculated. Data on caries experience (number of decayed, missing and filled tooth surfaces) and occlusal traits (using Dental Aesthetic Index) were collected for each child. The CPQs and PPQ showed acceptable internal consistency and construct validity against global ratings of oral health and overall well-being. Children who had more caries or less acceptable occlusal traits reported poorer OHRQoL establishing the discriminant validity of the instruments. Parents of the children reported similar child OHRQoL. These results suggest that the instruments have consistency and validity in measuring OHRQoL of children in a general population.
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In a geographically defined child population aged 0-15, every twelfth child suffered from chronic illness. Their parents and randomly selected control children's parents were asked about their living conditions using questionnaires. Non-responders (30%) had the same sociodemographic profile as responders. The socioeconomic level in index families (n = 95) was lower than in control families (n = 166). Both parents worked fewer hours in index than in control families. Index mothers had more health problems and sick days than control mothers. The parents' social relations were most hampered by having children with allergic disorders or mental retardation. Despite reduced hours, more absence from work to care for sick children, and reduced leisure activities, two thirds of the parents of moderately/severely disabled children found it difficult to cater adequately to the needs of their child. A family approach is recommended to provide comprehensive care of children with chronic illness, in which both specialized and primary care are needed.
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Despite increased interest in the wellbeing of families with children with chronic conditions and disabilities, instruments to assess family impact of health conditions are still lacking in German speaking countries. The Impact on Family Scale has been developed in the Anglo-american literature as a self report instrument to assess the consequences of chronic conditions and disability in childhood and adolescence for the family. The present paper describes the translation and psychometric testing of a German version of the Impact on Family scale (Familien-Belastungs[FaBel]-Questionnaire). The questionnaire contains 33 Likert-scaled items to assess the general negative impact of parents, the description of social relationships, the concern for siblings, the financial impact and problems in coping as well as a total score. The FaBel questionnaire was used and tested for psychometric criteria of reliability and validity in a cross-sectional study of 273 families with children with chronic conditions and disabilities. The results of this psychometric testing of the FaBel-Questionnaire show acceptance by responders, acceptable construct validity, good internal consistency and discriminant validity. The psychometric structure of the questionnaire corresponds with psychometric results with another German population of children with chronic conditions. The results suggest the applicability of the instrument to assess family impact of chronic disease and disability in children and adolescents.
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Background: Treatment for patients with diverse craniofacial conditions is complex and long-term. Craniofacial conditions profoundly influence health-related quality of life, and patient- and parent-reported outcomes provide a critical and complementary perspective on the multidisciplinary treatment of patients. However, little is known regarding the health-related quality of life among children with diverse craniofacial conditions. The purpose of this study was to systematically review the literature regarding patient- and parent-reported outcomes measures for patients with diverse craniofacial conditions. Methods: Articles from the PubMed, PsychINFO, CINAHL, Embase/MEDLINE, Scopus, and Web of Science databases that used patient- and/or parent-reported outcome instruments in patients with diverse craniofacial conditions were reviewed. Diagnoses included were cleft lip and/or palate, craniosynostosis, microtia, craniofacial microsomia, facial vascular malformations, and congenital nevi across pediatric populations (0 to 22 years of age). Results: Six hundred ninety articles were identified, and 155 were selected for inclusion. One hundred twenty different health-related quality-of-life tools were used to analyze factors such as physical, psychological, or social function. Of these, the 10 most common psychometrically tested tools were identified in 59 studies. Five tools had both parent and patient versions. Two tools were developed and validated for patients with diverse craniofacial conditions, but neither was developed for nonadolescent children. Conclusions: Many parent- and patient-reported instruments are used to measure varying health-related quality of life factors in this population, but no tool exists that was developed and psychometrically tested in different facial deformities that measures comprehensive health-related quality of life issues across all pediatric ages. This study will guide the development of new tools to measure the parent and patient health-related quality-of-life perspective in patients with diverse craniofacial conditions.
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This study aimed to assess the impact of nonsyndromic oral cleft (NSOC) on families' quality of life (QoL) using the Brazilian version of the Family Impact Scale (B-FIS). A hospital-based case-control study was conducted with NSOC cases and unaffected controls recruited at Dental Clinic in Federal University. The mean B-FIS scores were 10.32 (SD 6.53) and 5.04 (SD 4.73), while the median scores were 9.00 and 3.50 (p < .05 Wilcoxon test), respectively, in case and control group. The "parental/family activity" subscale had the highest impact average score in case (5.62 SD 3.76) and control group (3.00 SD 3.08) (p < .05 Mann-Whitney test). The types of cleft with the most impact were cleft lip (12.00 SD 8.98) and cleft lip with cleft palate (11.06 SD 6.74). NSOC affects the QoL of families with children who have this condition; however, there were no remarkable differences between the groups.
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Orofacial clefts are common birth defects that may impose a large burden on the health, quality of life, and socioeconomic well-being of affected individuals and families. They also result in significant healthcare use and costs. Understanding the impact of orofacial clefts on these outcomes is important for identifying unmet needs and developing public policies to reduce the burden of orofacial clefts at the individual, family and societal levels. This paper reviews and summarizes the main findings of recent studies that have evaluated the impact of orofacial clefts on these outcomes, with a focus on quality of life, socioeconomic outcomes, long-term health, and healthcare use and costs. Several studies identify an increased burden of orofacial clefts on these outcomes, but some of the findings are inconsistent. A summary of the primary limitations of the studies in this area is presented, along with recommendations and directions for future research.
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While descriptions of the effects of chronic childhood illness on the family appear in the literature, there have been few attempts to develop a formal measure of this impact. As part of a longitudinal study of chronic illness in childhood, the development of a measure was undertaken. The conceptual framework and methodology employed in scale development are described. A 24-item scale is presented which elicits variability in response and which is internally consistent. A factor analysis reveals that 4 dimensions of impact are contained in the measure: Financial, Social/Familial, Personal Strain, and Mastery. Psychometric data were derived from administration of the instrument to 100 mothers of chronically ill children. The potential usefulness of the scale in health research is discussed.
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Most parents are emotionally traumatized when confronted by the birth of a baby with an orofacial cleft (OFC). Affected families may have to compensate for increased financial, social and personal impacts before primary treatment is completed. This study was conducted to identify factors influencing the quality of life (QoL) of families having young children with OFC. A self-administered questionnaire containing the impact on family scale was applied in 130 consecutive families having children with OFC aged between 6 and 24 months. The results were related to the type of cleft and the time of initial diagnosis using non-parametric tests and multivariate correlation analysis (P<0.05). In families having children with isolated cleft lip, financial and social impacts were reduced, but problems in coping were increased when compared to families with children having cleft lip and palate or isolated cleft palate. Total impact was highest in families having children with isolated cleft palate, probably due to later surgery for reconstruction. Prenatal diagnosis of OFC did not reduce the general impact on affected families, but increased the social impact. The relation of certain impacts to distinct types of cleft might allow more tailored support of affected families and improve their QoL.