|Year : 2022 | Volume
| Issue : 3 | Page : 135-140
Oral health-related quality of life of preschool children with a cleft lip or palate and their families
Divya Karikalan, Iyapparaja P, Madankumar PD
Department of Public Health Dentistry, Ragas Dental College and Hospital, Chennai, Tamil Nadu, India
|Date of Submission||24-Jul-2022|
|Date of Decision||04-Aug-2022|
|Date of Acceptance||22-Aug-2022|
|Date of Web Publication||15-Nov-2022|
Department of Public Health Dentistry, Ragas Dental College and Hospital, 2/102, East Coast Road, Uthandi, Chennai, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Background: Cleft lip and cleft palate are the most common congenital developmental deformities found worldwide. Children with oral clefts have a range of functional and esthetic complications. Hence, the successful management of children born with oral clefts requires coordinated care provided by several specialties. Knowledge of oral health-related quality of life improves treatment quality as children with oral clefts require multidisciplinary care aiming at a satisfactory quality of life. Objectives: In this study, the aim was to evaluate the oral health-related quality of life of children with oral clefts aged two to six years who had undergone surgical treatment using the Early Childhood Oral Health Impact Scale (Tamil version). Methods: This cross-sectional study was conducted for parents with children born with cleft lip and cleft palate, who had undergone treatment at a Tertiary Care Centre, Thanjavur, Tamil Nadu, India. A sample of 60 parents was selected, and the oral health-related quality of life of their children was assessed by applying the Early Childhood Oral Health Impact Scale questionnaire in Tamil language. Results: Comparison of the three groups i.e., cleft lip, cleft palate, and cleft lip and cleft palate, respectively, revealed no significant difference (P = 0.290) regarding the mean scores. Conclusion: Oral clefts and their treatment can negatively impact the quality of life of young children and their families, irrespective of the type of clefts. Therefore, the assessment of these influences can help clinicians and researchers improve the overall oral health outcomes of young children.
Keywords: Cleft palate, early childhood oral health impact scale, oral cleft, quality of life
|How to cite this article:|
Karikalan D, Iyapparaja P, Madankumar PD. Oral health-related quality of life of preschool children with a cleft lip or palate and their families. Sci Dent J 2022;6:135-40
|How to cite this URL:|
Karikalan D, Iyapparaja P, Madankumar PD. Oral health-related quality of life of preschool children with a cleft lip or palate and their families. Sci Dent J [serial online] 2022 [cited 2022 Dec 3];6:135-40. Available from: https://www.scidentj.com/text.asp?2022/6/3/135/361157
| Background|| |
Cleft lip and cleft palate are the most common congenital developmental deformities found worldwide. In India, the birth prevalence of clefts is between 27,000 and 33,000 clefts per year. Cleft lip and cleft palate can occur in isolation or in combination with other congenital deformities, of which the majority are non-syndromic in nature. In recent years, this situation has been significantly improved by the intervention of non-governmental organizations; for instance, Smile Train provides primary surgical repair programs. In 2008, the World Health Organization (WHO) recognized non-communicable diseases, including cleft lip and cleft palate, in their Global Burden of Disease (GBD) initiative.
Children with oral clefts suffer from a range of functional and esthetic complications, including feeding difficulties at birth due to problems with oral seal, swallowing, nasal regurgitation, hearing and speech difficulties, and articulation problems. These clefts can be surgically treated in childhood, but residual deformities due to scarring and abnormal facial development result in functional and psychosocial problems. Thus, clefts have an extended, adverse influence on affected individuals’ health and social behavior. Successful management of children born with a cleft lip and cleft palate requires coordinated care provided by several specialties, including oral/maxillofacial surgery, otolaryngology, genetics/dysmorphology, speech pathology, orthodontics, and prosthodontics, etc. This successful reconstruction routinely requires multiple phases of surgical intervention. The psychosocial well-being of parents who have children with an oral cleft is affected, and it is emotionally traumatic for parents. Moreover, patients may experience anxiety, low self-esteem, dissatisfaction with their esthetic appearance, difficulties in pronouncing words, reduced cognitive function, limited academic achievement, and parental stress.
Rehabilitation treatment for clefts begins in childhood with plastic surgeries to repair the cleft lip at 3 months of age and the cleft palate at 12 months and is completed in adulthood, lasting for the individual’s entire life.
Quality of life (QoL) and oral health have gained attention in dentistry, exerting physical and psychosocial effects on lives of people. Oral Health-related Quality of Life (OHRQoL) is a patient-reported outcome measure for assessing the functional, emotional, and psychosocial aspects of oral health. Knowledge of OHRQoL improves treatment quality as children with oral clefts require multidisciplinary care aiming at a satisfactory QoL. Among various questionnaires available to measure the OHRQoL of children, one such instrument is the Early Childhood Oral Health Impact Scale (ECOHIS). This scale has been specifically developed and validated for preschool children. ECOHIS is parent-assessed OHRQoL. This study aims to evaluate the OHRQoL of children aged two to six years with cleft who have undergone surgical treatment using ECOHIS in Tamil.
| Materials and Methods|| |
This study was approved by the Institutional Review Board of Ragas Dental College and Hospital (Institutional Ethics Committee Number- 20220136).
This cross-sectional study was conducted among the parents of children born with cleft lip and cleft palate who had undergone treatment at a Tertiary Care Centre, Thanjavur, Tamil Nadu, India. The study was conducted between March and June 2022.
Sample size calculation
The sample size was calculated using G*Power software (version 3.1) based on the data results from a study conducted by Lakshya Rani S et al. (2021). The software was given the following inputs: The alpha error was set at 5% (0.05), power was set at 80% (0.08), and effect size was set at 0.31. A final sample of 30 parents whose children had undergone treatment for oral clefts and were revisiting the Tertiary Care Centre for further follow-up participated in the study.
Eligibility criteria included parents having children with syndromic and non-syndromic cleft lip and cleft palate; parents having children who had undergone treatment for cleft lip and palate; parents with children aged two to six years, and parents or legal guardians who had given consent to participate in the study. Parents having children who had untreated cleft lip and palate as well as parents who were not willing to participate voluntarily in this study were excluded.
ECOHIS was translated and validated into the Tamil version, among the Dravidian languages of India, by Lakshya Rani. S et al. for the Tamil speaking population to use. A sample size of 60 parents with children treated for oral clefts participated as this scale is based on parents’ perceptions of the health and illness of their children. The OHRQoL of children was assessed by applying the ECOHIS questionnaire in Tamil for the ease of understanding of the parents. The QoL was evaluated by a questionnaire on ECOHIS answered by the parents. All parents or guardians were educated about the study and were made to sign a free and clarified consent form. Background information, including the relationship to the child, such as mother or father, age of the parent or guardian, gender of the child, date of birth of the child, and socioeconomic status of parents and their educational status, was included in the questionnaire. The participant’s confidentiality and privacy were secured.
The ECOHIS questionnaire comprised 13 multiple-choice questions, of which 9 questions assessed the impact of oral problems on the child and 4 questions evaluated the impact of oral problems on the child’s family. “The parents’ answers were categorized according to a 5-point Likert scale as follows: 0 = never; 1 = almost never; 2 = sometimes (on occasion); 3 = frequently; 4 = very frequently; 5 = I do not know.
Printed forms of the ECOHIS questionnaire were distributed to all parents, and they were asked to answer all questions by selecting the appropriate response. The parents took approximately 10 minutes to answer the questionnaire. After completion, the printed forms were submitted to evaluate their children’s OHRQoL by applying ECOHIS.
The collected data were entered into Microsoft Excel 2019 version, and statistics were analyzed by using the Statistical Package for the Social Science (SPSS) version 20.0.
Descriptive statistics were performed, and the overall ECOHIS score was calculated by summing up the subscale scores. Differences among the cleft lip, cleft palate, and cleft lip and palate pathology were assessed by using one-way ANOVA with a P value <0.05, which was considered to be statistically significant.
| Results|| |
In this cross-sectional study, a total of 72 parents were approached, and among them, only 60 parents satisfied the inclusion criteria. [Table 1] summarizes the demographic characteristics of the study population. Out of 60 children with oral clefts, 75% had cleft lip and palate defects, 18.3% had cleft palate, and 6.7% had cleft lip pathology. The study comprised 55% male and 45% female cleft-treated children. Most participants who answered the questionnaires were mothers (85%), while the remaining (15%) were fathers, with the mean age of the parents being 31.1 ± 4.6 ranging between 23 and 39 years. Around 93% of the parents had at least a minimum level of educational background; still, 7% of the participants were illiterate. The socioeconomic status of parents was classified using a Modified Kuppuswamy socioeconomic scale updated for the year 2020. Moreover, in this study, there were no parents under Class I and Class II socioeconomic status. The highest proportion of the study participants belonged to the lower-middle socioeconomic class (Class III, 60%). [Table 2], [Table 3], and [Table 4] summarize the answers for the ECOHIS questions 1–13 distributed for cleft lip children, for cleft palate children, and for cleft lip and palate children, respectively. Comparison of the three groups, i.e., cleft lip, cleft palate, cleft lip, and palate, revealed no significant difference (P = 0.290) regarding the mean scores [Table 5].
|Table 1: Demographic characteristics of cleft children and their parents|
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|Table 5: Results of the one-way ANOVA test between the ECOHIS mean scores and types of oral clefts (i.e., cleft lip, cleft palate, cleft lip and palate)|
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| Discussion|| |
ECOHIS is one of the most commonly used questionnaires to determine the QoL in preschool children aged less than six years. Perceptions of parents regarding the impact of oral conditions on the daily lives of these children and their families were assessed using this scale. Up to 5 years of age, children have difficulty understanding basic health concepts and tend to allow exaggerated responses. According to child developmental psychology, at six years, abstract thinking and self-concept commence in children. Children begin to match their physical features and personality traits with those of other children or to social norms.
ECOHIS has been translated and validated in several languages, including Chinese, French, Malayalam, and Tamil, etc., to evaluate the impact of OHRQoL of children in different countries as China, France, India, etc. It is imperative to evaluate various language versions of this instrument to assure that every version exhibits psychometric properties similar to the original version and guarantee its effective utilization for cross-cultural comparisons.
No differences were found between the ECOHIS mean scores and types of oral clefts (i.e., cleft lip, cleft palate, and cleft lip and palate). These findings revealed that parents exhibit more influential effects on preschool children irrespective of the type of cleft pathology. The reason for the parent’s influential effect on their child might be due to their parenting style and how becoming a parent had changed the way they felt about their own cleft child.
Eslami et al. reported no difference in OHRQoL between unilateral and bilateral cleft lip and palate patients, which was in agreement with that reported herein as differences among three groups of clefts were not observed. Children with cleft lips are at an increased risk for socio-emotional difficulties during their school years. Children with cleft lip and palate are more prone to velopharyngeal dysfunction, leading to speech problems. Broder et al. (2017) reported that cleft patients who received surgery had higher Child Oral Health Impact Profile (COHIP) scores than those without surgical recommendation. However, the quality of reconstructive and supportive procedures that individuals with chronic health conditions receive can impact their health-related QoL.
Kushnir et al. reported that oral health conditions are closely associated with QoL. Frequent and nonemergency dental visits are associated with enhanced OHRQoL. Berk et al. reported that cleft lip/cleft palate adults exhibit higher levels of social anxiety than those of unaffected adults. They not only lack social skills but also may experience or anticipate interactional difficulties, resulting from their craniofacial condition.
Stock et al. reported that parents who themselves have oral clefts help in fostering a unique and close relationship with their child through shared experiences. The parents’ individual experiences of growing up with oral clefts impact their thoughts, their reactions to their child’s diagnosis of clefts, and the parenting styles that they subsequently adopt. Despite multidisciplinary care, patients with clefts still had oral health problems, impacting their QoL. In the future, additional research can support the development of public policies to describe a holistic picture of OHRQoL among cleft patients, such as esthetic evaluation to reduce the financial and psychosocial burden of clefts at the individual, family, and societal levels.
The limitation of this study was that only those parents availing hospital care were approached; hence, general perceptions of parents are apparently not available. The sample size was considered to be small; nevertheless, the prevalence of oral clefts in India was relatively low.
| Conclusion|| |
Oral clefts and their treatment can adversely impact the quality of life of young children and their families, irrespective of the type of clefts (i.e., cleft lip, cleft palate, and cleft lip and palate). However, the assessment of these effects can help clinicians and researchers improve the overall oral health outcomes for young children.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Corcoran M, Karki S, Harila V, Kyngäs H, Luoto A, Ylikontiola LP, et al
. Oral health-related quality of life among young adults with cleft in northern finland. Clin Exp Dent Res 2020;6:305-10.
Mossey P, Little J Addressing the challenges of cleft lip and palate research in India. Indian J Plast Surg 2009;42 Suppl:S9-S18.
Chopra A, Lakhanpal M, Rao NC, Gupta N, Vashisth S Oral health in 4-6 years children with cleft lip/palate: A case control study. N Am J Med Sci 2014;6:266-9.
Vyas T, Gupta P, Kumar S, Gupta R, Gupta T, Singh HP Cleft of lip and palate: A review. J Family Med Prim Care 2020;9:2621-5.
Gkantidis N, Papamanou DA, Karamolegkou M, Dorotheou D Esthetic, functional, and everyday life assessment of individuals with cleft lip and/or palate. Biomed Res Int 2015;2015: 510395.
Rando GM, Jorge PK, Vitor LLR, Carrara CFC, Soares S, Silva TC, et al
. Oral health-related quality of life of children with oral clefts and their families. J Appl Oral Sci 2018;26: e20170106.
Rani L, Dhanalaksmi . Translation and validation of ecohis scale in Tamil language. Int J Sci Develop Res 2021;6:423-8.
Saleem SM Modified Kuppuswamy socioeconomic scale updated for the year 2020. Indian J Forensic Community Med 2020;7:1-3.
Randrianarivony J, Ravelomanantsoa JJ, Razanamihaja N Evaluation of the reliability and validity of the early childhood oral health impact scale (Ecohis) questionnaire translated into Malagasy. Health Qual Life Outcomes 2020;18:39.
Martins-Júnior PA, Ramos-Jorge J, Paiva SM, Marques LS, Ramos-Jorge ML Validations of the Brazilian version of the early childhood oral health impact scale (Ecohis). Cad Saude Publica 2012;28:367–74.
Jabarifar SE, Golkari A, Ijadi MH, Jafarzadeh M, Khadem P Validation of a farsi version of the early childhood oral health impact scale (F-Ecohis). Bmc Oral Health 2010;10:4.
Lee GH, McGrath C, Yiu CK, King NM Translation and validation of a chinese language version of the early childhood oral health impact scale (Ecohis). Int J Paediatr Dent 2009;19:399-405.
Li S, Veronneau J, Allison PJ Validation of a french language version of the early childhood oral health impact scale (Ecohis). Health Qual Life Outcomes 2008;6:9.
Bhat SG, Sivaram R Psychometric properties of the Malayalam version of Ecohis. J Indian Soc Pedod Prev Dent 2015;33:234-8.
Jankauskienė B, Narbutaitė J, Kubilius R, Gleiznys A Adaptation and validation of the early childhood oral health impact scale in Lithuania. Stomatologija 2012;14:108-13.
Murray L, Arteche A, Bingley C, Hentges F, Bishop DV, Dalton L, et al
; Cleft Lip and Palate Study team. The effect of cleft lip on socio-emotional functioning in school-aged children. J Child Psychol Psychiatry 2010;51:94-103.
Broder HL, Wilson-Genderson M, Sischo L Oral health-related quality of life in youth receiving cleft-related surgery: Self-report and proxy ratings. Qual Life Res 2017;26:859-67.
Damiano PC, Tyler MC, Romitti PA, Momany ET, Jones MP, Canady JW, et al
. Health-related quality of life among preadolescent children with oral clefts: The mother’s perspective. Pediatrics 2007;120:e283-90.
Kushnir D, Zusman SP, Robinson PG Validation of a Hebrew version of the oral health impact profile 14. J Public Health Dent 2004;64:71-5.
Berk NW, Cooper ME, Liu YE, Marazita ML Social anxiety in chinese adults with oral-facial clefts. Cleft Palate Craniofac J 2001;38:126-33.
Stock NM, Rumsey N Starting a family: The experience of parents with cleft lip and/or palate. Cleft Palate Craniofac J 2015;52:425-36.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]