QOL In Children Research Articles

Nonpharmacological Interventions Addressing Pain, Sleep, and Quality of Life in Children and Adolescents with Primary Headache: A Systematic Review.

PurposeChildren and adolescents with primary headache are at risk of persistent somatic symptoms and reduced quality of life (Qol) due to pain and pain-related behaviors, such as avoiding school and activities. Sleep is essential to health, and children and adolescents with primary headaches have more sleep complaints than do healthy controls. A treatment approach that addresses multifactorial causes is likely important. Nonpharmacological interventions seem promising. However, knowledge about effective strategies is limited. The objective of this review is to assess the effect of nonpharmacological interventions in randomized controlled trials (RCTs) among children and adolescents with primary headache in order to identify useful strategies.Patients and methodsOutcome measures are pain, sleep, Qol, and coping versus no intervention or control intervention. Medline, CINAHL, EMBASE, and PsycINFO were searched for eligible trials. ClinicalTrials.gov. was searched for ongoing trials. Initial searches yielded 2588 publications. After initial screening and subsequent full-text review and quality assessment, 13 RCTs reported in 15 articles were selected for review. All reviewers independently assessed study quality using the CONSORT criteria for nonpharmacological interventions.ResultsCognitive behavioral therapy (CBT), including education on pain-related topics, sleep, coping, and stress management, is an effective strategy for reducing headache and pain within groups over time. Fifteen studies assessed pain, 3 studies assessed sleep, 6 studies assessed Qol, and 11 studies assessed coping.ConclusionStrategies identified as useful were parts of CBT interventions. However, it was not possible to identify a single effective intervention addressing pain, sleep, Qol, and coping in children and adolescents with headache, primarily because sleep was infrequently addressed. Various aspects of Qol and coping strategies were assessed, rendering comparison difficult. Strategies for future interventions should include descriptions of theory-driven CBT interventions, depending on clinical setting and based on local resources, to promote a solid evidence base for nonpharmacological interventions.

Factors Associated with Health-Related Quality of Life in Children with Intestinal Failure

To evaluate disease-specific and age-related factors contributing to health-related quality of life (HRQOL). in children with intestinal failure. A prospective study of HRQOL was performed in a regional intestinal rehabilitation program. Parent-proxy Pediatric Quality of Life Inventory surveys were administered annually to families of 91 children with intestinal failure over a 6-year period. Survey data was stratified by age and compared with pediatric HRQOL data in healthy and chronically ill populations. Linear mixed-effect models using multivariable regression were constructed to identify associations with HRQOL. A total of 180 surveys were completed by 91 children and their families. HRQOL scores were lowest for children ages 5-7years (P< .001) and 8-12years (P< .01), and these changes were primarily related to school dimension scores. In multivariable regression, age of 5years and older and developmental delay were independently associated with lower HRQOL scores. The trend toward lower HRQOL scores parallels reference data from healthy and chronically ill children, although patients with intestinal failure scored lower than both populations at school age. Children with intestinal failure experience lower parent-proxy HRQOL scores in the 5-7 and 8-12year age groups primarily related to school dimension scores. Multicenter data to validate these findings and identify interventions to improve QOL for children with intestinal failure are needed.

Beyond Intraocular Pressure: Visual Functioning and Quality of Life in Primary Congenital Glaucoma and Secondary Childhood Glaucoma

To compare the visual functioning (VF) and vision-related QoL (VRQoL) of children 8-18 years old treated for primary congenital glaucoma (PCG) and secondary childhood glaucoma. Cross-sectional study. A total of 309 children 8-18 years old treated for PCG and secondary childhood glaucoma between 2000 and 2010 by a single pediatric glaucoma specialist were prospectively enrolled at LV Prasad Eye Institute, Hyderabad, India. Children completed 2 questionnaires, the LV Prasad Functional Vision Questionnaire-II (LVP-FVQ-II), and the Impact of Vision Impairment-Children (IVI-C) questionnaire. Rasch-calibrated scores from both these questionnaires were used to compare the VF and VFQoL between the 2 groups. Mean ages of the children were 12.2 and 12.6 years in the PCG (53%, median age at diagnosis=5months) and secondary glaucoma groups (47%, median age at diagnosis= 3 years), respectively. A majority (80%) of children had bilateral glaucoma and underwent filtering surgery (83%). Mean better eye logMAR visual acuity (VA) was comparable between PCG and secondary childhood glaucoma groups (0.49 vs 0.52, respectively; P= 0.59). Children with PCG reported significantly better VF and VRQoL than secondary childhood glaucoma patients. Unadjusted and adjusted childhood glaucoma group comparisons revealed secondary childhood glaucoma to be associated with worse VF and VRQoL compared to PCG (difference for VF,-0.83; 95% confidence interval [CI],-1.34 to 0.31; P= 0.002; 0.39; 95% CI, 0.16-0.62; P=0.001 for VRQoL). Results show that children with treated PCG experience significantly better VF and VRQoL than those with secondary childhood glaucoma, despite comparable VA and IOP.

A review of the instruments for measuring Oral Health-Related Quality of Life in children.

The introduction of the measurement of Oral Health-Related Quality of Life (OHRQoL) into a comprehensive assessment is highly significant, since it provides essential information by considering the treatment needs of each individual and population from their own perspective. Likewise, it is an important tool for the assessment of interventions, services and public health programs, especially those aimed at children and adolescents, since they are one of the main objective groups of the dental services. The aim of this paper is to review the main available instruments for measuring OHRQoL, especially in children. Measuring quality of life according to the oral health status is subjective, since it is influenced by different factors that cannot be observed in a direct manner. These instruments were developed for that purpose and represent dimensions that seek to value the personal psychosocial perception of each individual. Several health problems affect the QoL of children and adolescents, including: DDQ, Michigan OH, OH-ECQOL, SOHO-5, ECOHIS, Child-DPQ, Child-OHIP, Child-OIDP, CPQ8-10, CPQ11-14, DFTO, IFAQ, MIQ, P-CPQ, PedsQ1 OH, POQL, among others.

Impact of family-centered tailoring of pediatric diabetes self-management resources.

BackgroundThe American Diabetes Association recommends a family‐centered approach that addresses each family's specific type 1 diabetes self‐management barriers.ObjectiveTo assess an intervention that tailored delivery of self‐management resources to families' specific self‐management barriers.SubjectsAt two sites, 214 children 8‐16 years old with type 1 diabetes and their parent(s) were randomized to receive tailored self‐management resources (intervention, n = 106) or usual care (n = 108).MethodsOur intervention (1) identified families' self‐management barriers with a validated survey, (2) tailored self‐management resources to identified barriers, and (3) delivered the resources as four group sessions coordinated with diabetes visits. Mixed effects models with repeated measures were fit to A1c as well as parent and child QOL during the intervention and 1 year thereafter.ResultsParticipants were 44% youth (8‐12 years) and 56% teens (13‐16 years). No intervention effect on A1c or QOL was shown, combining data from sites and age groups. Analyzing results by site and age group, post‐intervention A1c for teens at one site declined by 0.06 more per month for intervention teens compared to usual care (P < 0.05). In this group, post‐intervention A1c declined significantly when baseline A1c was >8.5 (−0.08, P < 0.05), with an even larger decline when baseline A1c was >10 (−0.19, P < 0.05). In addition, for these teens, the significant improvements in A1c resulted from addressing barriers related to motivation to self‐manage. Also at this site, mean QOL increased by 0.61 points per month more during the intervention for parents of intervention youth than for usual care youth (P < 0.05).ConclusionsTailored self‐management resources may improve outcomes among specific populations, suggesting the need to consider families' self‐management barriers and patient characteristics before implementing self‐management resources.

Assess Quality of Life of Children with Beta Thalassemia Major

Background: It is imperative to know further about QOL in children to assess and improve the care that they receive. Quality of life varies from other forms of medical assessments in that it emphases on the people's own opinions of their welfare and other features of life. Aim of study: Assess the quality of life among children with beta-thalassemia. Design: A descriptive research design was utilized in this study. Setting: the study was carried out at the outpatient hematology clinic at Mansoura University children's hospital in Dakahlia governorate. Sample: the study sample was collected from 124 children with beta thalassemia major. Results: Almost all the studied children who complied with blood transfusion had low QOL. Also, the majority compliant with chelation therapy had lowQOL. The studied thalassemic children experienced moderate QOL related to physical, emotional, and school functioning and experienced high QOL regarding social functioning. Conclusion: the highest percentage of the studied children had moderate levels of QOL. There was a statistically significant association between children's QOL and their knowledge. Moreover, there was a positive relation between children's ages and their total scores of QOL. Recommendation: regularand continuous health education programs are essential for children suffering from beta thalassemia and their mothers.

A Narrative Approach to Describe QoL in Children With Chronic ITP.

Objective: Primary immune thrombocytopenia (ITP) is a hemorrhagic disorder. Spontaneous recovery within 12 months occurs in the majority of pediatric patients. Nevertheless, in 20–30% of children the disease is chronic. The impact extends to the patients' families, whose everyday life, in terms of interpersonal relationships and financial status, is adversely affected. This study investigated the ability of a narrative instrument to improve the quality of life of pediatric chronic ITP patients and their families and quantified the familial burden imposed by the illness.Method: A quantitative survey and a narrative plot delivered through an online platform were adopted for the analysis.Results: Pediatricians of ten Italian Hematologic Centers explained the projects to patients and their family in the outpatient clinic. 70 caregivers of children with ITP filled the ad-hoc questionnaire. Data from 53 caregivers revealed the emotional impact of pediatric chronic ITP. The narrative approach highlighted the specific resources used by patients and their families to cope with the disease and its chronicity.Discussion: Caregivers underlined the need for “humaneness” in their interactions with clinical personnel. The majority of respondents provided positive feedback regarding the narrative project, defining the experience as “liberating” and improving their quality of life.

Relationship between Child Occupational Self-Assessment and Quality of Life in Elementary School Children

ABSTRACTThe purpose of this study was to examine the relationship between the Child Occupational Self-Assessment (COSA) and quality of life (QoL) in elementary school children. A total of 77 children from a public elementary school were included in the study. A survey was conducted using the COSA and the Kid-KINDLR. The COSA consists of 25 items on occupational competence and value. The items are classified into four factor structures: challenging occupation, motivated occupation, daily life tasks, and expected tasks. The Kid-KINDLR is a scale consisting of 24 items in question form by which the QOL of children can be grasped in multiple dimensions. Groups that obtained high and low QoL levels showed a significant difference in COSA regarding the value score obtained in the challenging occupation factor. Tackling, trying to solve, or struggling with difficult tasks may improve QoL. Children actively working on mandatory activities, rather than doing given assignments, appear to have higher QoL.

Post-traumatic Stress Disorder in Children Affected by Type 1 Diabetes and Their Parents

Type 1 diabetes is a challenge for children, adolescents, and their families as it affects the quality of life and lifestyle of the whole family context. Diabetes onset and its chronic management could be therefore particularly related to post-traumatic stress disorder (PTSD), a group of persistent psychological and physiological symptoms due to a traumatic and severe event. The aim of this study was to assess the rate of PTSD in a group of pediatric patients with T1DM and to evaluate the relationship between parental trauma and quality of life. Forty-nine prepubertal children affected by T1DM and their families were consecutively enrolled in the study. Patients and parents were asked to complete two types of questionnaires: (1) The Impact of Event Scale (IES) questionnaire for the evaluation of PTSD. (2) The PedsQL™3.0 Diabetes Module questionnaire to measure diabetes-specific QOL in both children and their parents. Our data suggest that a clinical level of trauma is present in 66.7% of mothers and 65.5% of fathers of T1D children. Parents with medium or high IES Scores demonstrated lower levels of QoL. The results of this study show a high prevalence of acute post-traumatic stress symptoms in parents of prepubertal children with T1DM. This finding is consistent with data from adult diabetic patients. Our data demonstrated also a relation between parents’ level of traumatism and declared QoL scores. Indeed, our data confirm that the duration of diabetes negatively correlates with the QoL by both, parents and patients.

The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma.

Monocular vision has been found to have a negative effect on children's motion processing and motor functions. Yet, knowledge of motor function of survivors of retinoblastoma (RB) with monocular vision (due to enucleation, for example) is limited. This study examined motor function and its relationship to visual-related and health-related quality of life (HRQOL) in survivors of RB with monocular vision. Parents of 27 survivors of RB, who underwent an enucleation of one eye resulting in monocular vision, and of 21 typically developing children between the ages of 6 and 12, were administered questionnaires relating to their children's motor function (DCDQ), as well as vision-related function (CVFQ) and HRQOL (PedsQL). Of the 27 survivors of RB, 7 (25.6%) were found to have difficulties in motor functions, compared with 1 (4.8%) child in the control group. The difficulties were faced mainly in daily function requiring control during movement, including jumping, running, and ball playing. Additionally, significant correlations were found between motor functions and children's QOL. Finally, survivors of RB with monocular vision were found to have lower QOL, specifically physical- and school-related QOL. Survivors of RB who have monocular vision have a higher rate of decreased motor function and lower QOL. These results point to a need for ongoing assessment of survivors of RB to allow timely detection of motor deficits and to institute appropriate therapeutic interventions.

The effects of bone marrow mononuclear cell transplantation on the quality of life of children with cerebral palsy

BackgroundQuality of life (QOL) is an important factor in evaluating the effectiveness of treatment in children with cerebral palsy (CP). The aim of this study was to evaluate the effects of autologous bone marrow mononuclear cells (BM MNCs) on the QOL of children with CP.MethodsFrom December 2015 to December 2016, 30 children with CP aged from 2 to 15 years received two intrathecal infusions of BM MNCs, one at baseline and the other 3 months later, at Vinmec International Hospital. The motor function and muscle tone of the patients were evaluated using the Gross Motor Function Measure (GMFM)-88 and Modified Ashworth Score, respectively. Their QOL was assessed at baseline and 6 months after the first BM MNC transplant using the Vietnamese version of the Cerebral Palsy Quality of Life Questionnaire for children (CP QOL-Child)–the parental proxy report, which comprises seven domains. Nineteen mothers (mean age: 32.9±4.9 years) and 11 fathers (mean age: 36.1±6.8 years) were invited to complete the CP QOL-Child assessment before and after the transplantations, Paired t-tests and multivariate regression analyses were used to evaluate the changes in QOL and GMFM scores and to identify the key factors correlated with the QOL score.ResultsSignificant changes were observed in the children’s gross motor function and muscle spasticity, as evidenced by the GMFM-88 total score, scores for each of its domains, the GMFM-66 percentile and the muscle tone (P < 0.001). Six months after the transplantations, the QOL scores of children with CP were markedly increased (P < 0.001) for all the domains, except for the domain of access to services. In the multivariate regression analysis, significant associations were found between higher age of children and higher QOL except for feeling about functioning and pain and impact of disability domains. Gross Motor Function Classification System (GMFCS) level was negatively correlated with the score of pain and impact of disability domain, while the GMFM-88 scores were positively correlated with the QOL in terms of feelings about functioning and family health domain (P < 0.05).ConclusionThe QOL of the children with CP was noticeably improved 6 months after BM MNC transplantation and was accompanied by improvements in gross motor function and muscle tone.Trial registrationClinicalTrials.gov Identifier: NCT02574923. Registered on October 14, 2015.

Health-related quality of life in Spanish coeliac children using the generic KIDSCREEN-52 questionnaire.

Overall, the KIDSCREEN-52 questionnaire revealed that CD had no substantial negative impacts on the children's QOL. However, some concerns from the children's perspective were identified, such as issues regarding relationships with their peers. These issues will need to be addressed in order to improve QOL in children with CD. What is Known: • According to the Spanish version of the specific CDDUX, parents and children felt CD had no substantial negative impacts on their HRQOL. What is New: • According to the generic KIDSCREEN-52 questionnaire, QOL in Spanish coeliac children does not seem to be negatively affected by the disease in most general aspects of life. • Parents have a worse perception of their children's HRQOL than their children themselves.

Feasibility study of a combined lifestyle behaviors and asthma self-management intervention for school-aged children.

The purpose of this study is to test the feasibility of delivering an intervention that combines healthy lifestyle behaviors related to weight management with asthma self-management, the Living Healthy with Asthma intervention, to children who have asthma. Using a mixed design, the feasibility study of the 12-week Living Healthy with Asthma intervention was conducted with a single group of children diagnosed with asthma. Pretest and posttest data were collected on asthma-related (self-management, metered dose inhaler [MDI] skill, asthma severity, quality of life [QOL]), and healthy lifestyle variables (body mass index [BMI], dietary quality). A matched comparison sample was drawn from a separate study that tested the same asthma self-management component (single intervention) used in the feasibility study to determine if the Living Healthy with Asthma intervention worked as well as the single intervention for improving children's asthma self-management. Thirteen school-aged children were enrolled in the feasibility study. There were significant reductions in BMI z-scores (P=0.007), and improvements in vegetable servings (P=0.03), MDI skill (P=0.005), children's QOL (P<0.001), and parents' QOL (P=0.03). When comparing the feasibility group with the matched comparison group (n=13), there were no significant differences in asthma self-management, MDI skill, or asthma severity after the interventions. Findings supported the feasibility of implementing the combined intervention, and it was not inferior to the single intervention-which supports nurses' efforts to help families manage multiple health problems.

Impact of Family-Centered Tailoring of Pediatric T1D Self-Management Resources

Background: Experts recommend family-centered self-management approaches that address specific T1D self-management barriers for each child and family. However, no system-level method currently exists to identify and address these barriers. Objectives: To assess the impact on glycemic control and QoL for the child and parent of a family-centered approach to the delivery of diabetes self-management resources. Methods: Children 8-16 years old with T1D and their parent(s) were randomized to receive either tailored self-management resources (intervention) or usual care. Our intervention 1) identified families’ self-management barriers with a validated survey, 2) tailored self-management resources to identified barriers, and 3) delivered these resources as group sessions coordinated with diabetes visits to optimize convenience, efficiency, and sustainability. Mixed effects models with repeated measures were used to examine the intervention’s impact on A1c and parent and child QoL during the 9-month intervention period and for a year thereafter. Results: Among 363 potentially eligible families, 267 (74%) consented to participate. Randomization allocated 1families to usual care and 1to the intervention. Participants were children (8-12 years, 44%) and teens (13-16 years, 56%). Mean diabetes duration was 5.4 years (sd 3.3) and 14% had an A1c &amp;lt;7.5%. Most families (69%) attended at least 3 of the 4 intervention sessions. No overall intervention effect on A1c or QoL for the child or parent was shown. However, at one site, mean A1c in the year post-intervention declined by 0.059% more per month for intervention group teens than for those receiving usual care (p=0.02). At this same site, mean parent QoL increased by 0.61 points per month more during the intervention for parents of intervention group children than parents of those receiving usual care (p=0.03). Conclusions: Findings can inform healthcare organizations’ decisions about ways to best deliver diabetes self-management resources. Disclosure R.V. Fiallo-Scharer: None. V.P. Rajamanickam: None. B.A. Chewning: None. M. Palta: None. T.B. Wetterneck: None. T. Wysocki: None. E.D. Cox: None.

Functional vision and quality of life in children with microphthalmia/anophthalmia/coloboma—a cross-sectional study

To determine the child's and parental perception of functional visual ability (FVA), vision-related and health-related quality of life (VR-QoL, HR-QoL) in children with microphthalmia/anophthalmia/coloboma (MAC). Between June 25, 2014, and June 3, 2015, we carried out a cross-sectional observational study at Moorfields Eye Hospital, London, UK, enrolling 45 children 2-16years of age with MAC attending our clinics, and their parents. To assess FVA, VR-QoL, and HR-QoL we asked participants to complete three validated tools, the Cardiff Visual Ability Questionnaire for Children (CVAQC), the Impact of Vision Impairment for Children (IVI-C) instrument, and the PedsQL V 4.0. The main outcome measures were the FVA, VR-QoL, and HR-QoL scores, reported by children and parents. In children with MAC, FVA is moderately reduced, with a median CVAQC score of -1.4 (IQR, -2.4 to 0.4; range, -3.0 [higher FVA] to +2.8 [lower FVA]). VR-QoL and HR-QoL are greatly reduced, with an IVI-C median score of 63 (IQR, 52-66; normal VR-QoL, 96), a median self-reported PedsQL score of 77 (IQR, 71-90; normal HR-QoL, 100) and parental score of 79 (IQR, 61-93), and a family impact score of 81 (67-93). Psychosocial well-being scores are lower than physical well-being scores. Parents and children have a different perception of the impact of the condition on the child's HR-QoL. MAC has a significant impact on a child's FVA and QoL, similar to that described by children with acute lymphoblastic leukaemia and chronic systemic conditions. Children and families may benefit from psychosocial support.

日本の子どもの学校と友だちに関する QOL _フィンランド子どもとの比較から_

日本の子どもの学校と友だちに関する QOL _フィンランド子どもとの比較から_

The Cellie Coping Kit for Children with Injury: Initial feasibility, acceptability, and outcomes

Physical and psychological challenges can arise from paediatric injury, which can impact child health outcomes. Evidence-based resources to promote recovery are limited. The low cost, portable Cellie Coping Kit for Children with Injury provides evidence-based strategies to help children manage injury-related challenges. This study aimed to describe intervention feasibility and explore initial outcomes (learning, quality of life [QOL], and trauma symptoms). Three independent pilot studies were conducted. Child-parent dyads (n=61) participated in the intervention; ~36% completed a 4-week follow-up assessment. Results suggested that the intervention was feasible (e.g., 95% of parents would recommend the intervention; >85% reported that it was easy to use). Over 70% of participants reported learning new skills. No statistically significant differences were detected for children's QOL or trauma symptoms preintervention to postintervention. Preliminary research suggests that the Cellie Coping Kit for Children with Injuries is a feasible, low-cost, preventive intervention, which may provide families with strategies to promote recovery from paediatric injury. Future research, including a randomized controlled trial, ought to further examine targeted long-term intervention outcomes.

Validation of the mini pediatric asthma quality of life questionnaire and identification of risk factors affecting quality of life among Lebanese children

ABSTRACTBackground: Few studies used various scales to assess the QOL in Lebanon in general but none was specific to asthma. Our objective was to assess the asthma-related quality of life, using the mini Pediatric Asthma Quality of Life Questionnaire (PAQLQ), in Lebanese asthmatic children, check its validity compared to the original version, and identify clinical and sociodemographic risk factors that might affect these children's QOL. Methods: This retrospective study included 300 children aged between 7–16 years (51.6% boys and 48.4% girls). To confirm the mini-PAQLQ questionnaire construct validity in the Lebanese population, an exploratory factor analysis was launched for the 13 items of the questionnaire, using the principal component analysis technique. Cronbach's alpha was recorded for reliability analysis. A multivariate analysis linear regression was carried out, taking the QOL score as the dependent variable. Results: The correlation coefficients for factors 1 (symptoms and emotions) and 2 (activities) were similar to that of the original scale. High Cronbach's alphas were found for factor 1 (0.914), factor 2 (0.888), and the full scale (0.921). Uncontrolled asthma, the child's respiratory problems before the age of 2 years, and the presence of pets at home significantly decreased the children's asthma-related quality of life (Beta = −1.541; Beta = −6.846, and Beta = −5.364, respectively). Conclusion: We were able to validate the mini-PAQLQ among the Lebanese population. The identification of risk factors, some of which are amenable to intervention, especially uncontrolled asthma, could lead to an improvement in the asthmatic children's QOL.

Influence of Disease Status on Symptom Burden and Quality of Life in Children with Cancer (S713)

•Understand the high prevalence of distressing symptoms in children with cancer.•Describe the relationships between family caregiver-reported symptoms/quality of life and physician-reported disease status in this cohort of children with cancer. Symptom burden in pediatric cancer patients worsens with disease progression and cancer-related treatment. However, the specific relationship between disease status and symptom burden/quality of life (QoL) is poorly understood. To describe the prevalence of symptoms of children with cancer, and evaluate the relationship of symptoms and quality of life with physician-reported disease status. Family caregivers of newly diagnosed or newly relapsed children completed symptom (MSAS) and QoL (PedsQL) questionnaires prospectively during a 24-month period. Physicians completed questionnaires measuring disease status (SOIS) at each time point. Statistical analysis via a Generalized Linear Mixed Model compared symptoms, QoL, and disease status at each point. Family caregivers of 43 children with cancer (19 ≤ 12 years old, 24 > 12 years old) were enrolled. >95% of children exhibited at least one symptom. Lack of energy (91%) and sadness (88%) were most prevalent. Caregiver-reported PedsQL scores showed significant negative correlation with SOIS scores. MSAS scores were not correlated with SOIS scores. Symptom burden was high in this cohort of children with cancer. Our results showed that increased disease severity correlated with decreases in caregiver-reported QoL, but had no direct relationship with perceived symptom burden. This may suggest that disease severity is more directly associated with QoL than actual symptom burden, even in a population with a high prevalence of symptoms. Alternately, physician reports of disease severity may influence parental perception of their child’s health-related QoL.

Impact of oral clefts on the oral health-related quality of life of preschool children and their parents.

To assess the oral health-related quality of life (OHRQoL) of preschool children with cleft lip and palate (CLP) and their relatives. In this cross-sectional study, 55 2-5-year-old children with the history of CLP were randomly selected from those referred to Shiraz Lip and Palate Cleft Research Center and treated with single-stage closure (Push back palatoplasty). Furthermore, same number of children with the same age who attended the Shiraz School of Dentistry for routine dental care were selected as control group using randomized sampling. Children's demographic data were obtained from their parents. Farsi version of the Early Childhood Oral Health Impact Scale (F-ECOHIS) was used for evaluating these children's QoL. We found a significant difference in OHRQoL between children with CLP and children without CLP in the overall score of F-ECOHIS and all of subscales. In the impact on children subscale, the difference between these groups was remarkable in limitations' domain. As for difficulties faced by children, question on "difficulty in pronouncing words" had the highest average score. Furthermore, in impact on family, in parental distress domain, the difference between these groups was remarkable. For difficulties faced by family, financial impact got the highest average score. No significant difference was found between boys and girls with CLP in all subscales. While according to the score of total F-ECOHIS in unilateral and bilateral CLP children, there was statistically significant difference in these groups. Since oral clefts affect the QoL of children and their families even after the usual treatments, the implementation and maintenance of multidisciplinary interventional strategies are required for establishment of facial esthetics, oral function, and psychological support for such individuals.