Evaluating structure and content of parent-implemented early logopaedic intervention models following the three stages of communicative development in children with cleft lip and/or palate: Systematic literature review with narrative synthesis.

BACKGROUND: The development of communication, speech and language follows three stages (development of the parent-child relationship, interactions and actual speech and language acquisition). Children born with cleft lip and/or palate are at increased risk of communicative problems while parents may be going through an emotionally difficult time. Early parent-implemented logopaedic intervention that supports both parents and child is important. Three systematic reviews have examined the effects of early speech and language interventions, but not their structure and content. AIMS: To investigate which early parent-implemented logopaedic interventions already exist for children with cleft lip and/or palate, and to evaluate their structure, content and time of onset against the three stages of communicative development. METHODS: Six databases (PubMed, Embase, Web of Science, APA PsycInfo, Cinahl and Scopus) were searched between inception and 31 March 2023 to identify published articles that reported early parent-implemented logopaedic interventions in children with cleft lip and/or palate, aged 0 to 3 years, clearly describing the strategies used to train parents. Two authors independently assessed the eligibility of the studies. Quality assessment was conducted using the Physiotherapy Evidence Database quality assessment tool, Single-Case Experimental Design tool and the National Institutes of Health pre-post-study tools. The structure and content of the interventions were analysed taking into account the needs and difficulties of both the parents and the child according to the three stages of communicative development. MAIN CONTRIBUTION: The systematic literature search identified four studies that met the inclusion criteria. Three of them had a Level of Evidence III and one study had a Level of Evidence IV. Strategies appropriate for Stage 1 of communicative development (parent-child relationship) are well represented in only one study, but the psychosocial needs of parents are currently not included in these programmes. However, research shows that parental emotional difficulties can adversely impact a child's communicative development. Strategies appropriate for Stage 2 (promoting social interactions) are better represented. However, strategies appropriate for Stage 3 (acquiring correct speech and language patterns) are most represented in all intervention programmes. CONCLUSIONS: Three out of four intervention programmes focus on Stage 3 (actual speech and language stimulation). Stage 1 is underrepresented and the psychosocial needs of parents are currently not included in existing intervention programmes. Further research is needed in close collaboration with psychologists to construct a comprehensive, longitudinal, developmentally appropriate intervention programme that equally represents the three stages of communicative development and considers the psychosocial needs of parents. WHAT THIS PAPER ADDS: What is already known on the subject Children with cleft lip and/or palate are at increased risk of speech and language problems from birth. Parents of these children often have emotional problems following their child's diagnosis. The effectiveness of early intervention to facilitate the child's speech and language development has already been proven. Early intervention is recommended for both parents and child, but little is known about early parent-implemented logopaedic interventions that also provide psychosocial support for parents. What this paper adds to existing knowledge This review has shown that existing early parent-implemented logopaedic interventions for children with cleft lip and/or palate focus mainly on facilitating responsive interactions and actual speech and language development (Stages 2 and 3 of communicative development). However, Stage 1, where the parent-child relationship develops, is currently not included, even though this stage is a prerequisite of subsequent stages. If parents are struggling with emotional problems (following their child's diagnosis) this can negatively impact their mental health, the parent-child relationship, attachment and their child's development. What are the potential or actual clinical implications of this work? A clinical implication of the findings in this review is that more attention should be paid to Stage 1 of communicative development in early parent-implemented logopaedic interventions. By working closely with the psychologist of the cleft (and craniofacial) team, any psychosocial needs of the parents can be included in the counselling. As a result, the parents and their child are seen and supported as a unit and the parent-child relationship can develop optimally.

Comparison of Facial Aesthetic Evaluation Given by Patients with Cleft Lip and/or Palate and Professionals: A Systematic Review.

OBJECTIVE: To compare the differences of facial aesthetic evaluation between patients with Cleft Lip and/or Palate (CL/P) and professionals for the treatment outcome of CL/P. DESIGN: This systematic review was conducted on MedLine, Web of Science, Embase and Cochrane Library databases. The Risk of Bias in Non-randomized Studies of Intervention (ROBINS-I) tool was used to evaluate the included researches. SETTING: Not applicable. PATIENTS, PARTICIPANTS: Patients with CL/P and professionals. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The facial aesthetic evaluation of patients with CL/P and professionals. RESULTS: Among the 1695 literatures retrieved, 22 articles were included, including 974 patients with CL/P and 251 professionals. The bias risk assessment on 21 articles was rated "Moderate" and only one article was rated "Serious". Due to the high heterogeneity of the included studies, meta-analysis was not possible, so descriptive analysis was conducted. Among the included studies, two articles indicated similar views from both groups, 19 noted differences between the two groups, of which three articles indicated more positive evaluation by professionals and nine articles indicated more positive evaluation by patients. CONCLUSIONS: The available data indicate that there is a difference between patients with CL/P and professionals in the aesthetic evaluation, but it is not clear which group is more positive. During the treatment of patients with CL/P, apart from the objective aesthetic evaluation, professionals should fully consider subjective ideas and self-assessment of patients, in order to improve the quality of life for patients.

What Parents of Children Born with a Cleft Lip and/or Palate Want to Know About the Care for their Child.

OBJECTIVE: Adequate health information that matches the needs of care recipients is a prerequisite for patient-centered care. To facilitate the provision of tailored and timely information, it isimportant to understand the information needs of parents of children and adolescents with cleft lip and/or palate (CL/P) themselves, and in addition they were asked how they experienced the provided care-related information. DESIGN: A cross-sectional study employing questionnaires and semi-structured interviews. SETTING: Participants were recruited from a cleft palate-craniofacial care unit in a major tertiary hospital in the Netherlands. PARTICIPANTS: Participants were parents or guardians of children with CL/P, and two adolescents with CLP. They were recruited through the outpatient clinic during multidisciplinary consultation or after clinical admission. RESULTS: In total, fifty-five questionnaires were completed by parents or guardians and eleven interviews were conducted with nine parents of children with CL/P and two adolescents with CL/P. In general, participants reported to be satisfied with provided information during hospital admission or multidisciplinary cleft team consultations (mean 8.0, scale 0-10). In addition, 25.5% (n = 14) indicated that information to prepare for hospital admission was lacking (eg, practical information). Thematic qualitative analysis yielded five main information needs: 1) Clear communication during the care process, 2) Overview of the care trajectory, 3) Specific care plan information, 4) Presentation of information and 5) Guidance and support. CONCLUSIONS: Our findings emphasize the importance of gaining insights into wishes and information needs from care recipients who can provide insights in their information needs. With these findings, information provision should be redesigned to improve and to foster the further transition to family-centered care.

Relevance of Fetal Brain Magnetic Resonance Imaging Compared to Ultrasound for Detecting Cerebral Anomalies in Fetuses with Cleft Lip and/or Palate: A Cohort Study.

INTRODUCTION: Relevance of fetal brain magnetic resonance imaging (MRI) in cases of cleft lip and/or palate (CL/P) is still discussed to date. The aim of our study was to review the contribution of fetal brain MRI for detecting cerebral anomalies in cases of CL/P comparing antenatal data with neonatal outcomes. METHODS: A retrospective multicenter study was conducted from January 2010 to October 2020 in two multidisciplinary prenatal diagnosis centers among women with a fetal ultrasound (US) diagnosis of CL/P. Prenatal imaging and genetic analysis data were collected, as well as postnatal data, including outcomes of children who had an abnormal prenatal MRI. RESULTS: Among the 202 fetuses with a US diagnosis of CL/P, 96 underwent US and fetal brain MRI. 19 brain MRIs were found to be abnormal: 14 (73.7%) involved CL/P associated with other US abnormalities and five (26.3%) involved isolated clefts, of which four were cleft lip and alveolus and secondary palate (CLP). MRI identified severe abnormalities that changed the prognoses of 3 cases of clefts associated with other US abnormalities. In contrast, MRI found only minor abnormalities for the five isolated clefts, with no postnatal disorders found in these children. CONCLUSION: Fetal brain MRI should be proposed in cases of clefts associated with other anomalies or if US examination is limited by local conditions. MRI could also be discussed in cases of isolated CLP but should not be performed in cases of isolated cleft lip.

Factors Influencing Parental Satisfaction in Children with Cleft Lip and Palate Repair Based on Comprehensive Plastic Surgery Procedures at the Senyum Bali Foundation.

Analyze contributing factors toward satisfaction after cleft lip and palate treatments in Senyum Bali Foundation. Qualitative case study, an interview with a semi-structured question from February to April 2023 by purposive sampling informants including parents, foundation staff, and plastic surgeon. Unsatisfying nose and teeth appearance due imperfect effects after surgery and requirement of more procedures. Mini model theory study that includes the appearance of the face and lips; speech and hearing; the functions of feeding, masticatory, breathing; psychosocial, quality of life, treatment cost-effectiveness, funding, health services, physician, implementing cultural contexts, surgical outcomes, and parents' feedback.

The Impact of the Covid-19 Pandemic on Cleft Lip and Palate Service Delivery for New Families in the United Kingdom: Medical and Community Service Provider Perspectives.

OBJECTIVES: Professionals in the United Kingdom providing care to new families affected by cleft lip and/or palate (CL/P) had to adapt to ensure families' needs were met during a time of uncertainty due to Covid-19. The aims of this study were to explore the impacts of the pandemic on CL/P care provision for new families from the perspectives of professionals working in medical and community settings along with any personal impact on professionals and their reflections on the future of CL/P care. DESIGN: Semistructured interviews (n = 27) were completed about experiences from March 2020 to October 2020 with consultant cleft surgeons (n = 15), lead clinical nurse specialists (n = 8), and staff working at the Cleft Lip and Palate Association (n = 4). Transcripts were analyzed using inductive thematic analysis. RESULTS: Three themes were identified: (1) the impact of Covid-19 on the provision of cleft care in the United Kingdom, including working conditions, delays to treatment, and Covid-19 policies; (2) the impact of the pandemic on professionals' mental health, including personal distress and concerns about Covid-19 exposure; and (3) reflections on the future of CL/P care, whereby professionals expressed both hope and concern about the Covid-19 recovery effort. CONCLUSIONS: The ongoing Covid-19 pandemic has impacted CL/P service delivery for new families significantly, warranting recommendations for cohesive psychological support for families in addition to a safe and resourced recovery effort. Support for professionals is also suggested, following existing evidence-based models for providers' needs that address the difficulties of working throughout challenging times.

Validity and reliability of the Family Empowerment Scale for parents of children with cleft lip and/or palate.

BACKGROUND: Empowerment is recognized as a crucial concept in strengthening the position of parents in healthcare services. This study aimed to evaluate the validity and reliability of the Turkish Family Empowerment Scale (FES). METHODS: This methodological study was conducted between January and March 2021, with 348 family members actively caring for their children in the age group of 0-18 years with cleft lip and/or palate (CL/P). The English FES was translated into Turkish using back translation and modified so that it is generic and convenient for all families. The construct validity, internal validity, internal consistency, and split-half test reliability and responsiveness of the Turkish FES were examined. RESULTS: The original FES structure with three factors (family, health services provided to the child and community participation) and 34 items was verified in Turkish culture. This obtained structure can explain 66% of the variance of the relevant concept. Scores of parents ranged between 34 and 170 points. Increasing scores indicated a positive significance regarding family empowerment. The Cronbach's α reliability coefficient of the scale was calculated as 0.976. CONCLUSION: The study findings and the goodness-of-fit values indicated that the FES and its Turkish version are a valid and reliable measurement instrument to be used in Turkish culture.

Clefts and Dental General Anesthesia: The South Thames Experience.

BACKGROUND: Children with clefts have high dental needs and often require a dental general anesthesia (DGA) for the management of their dentition. OBJECTIVE: To assess the number of children with clefts requiring a pediatric dental consultant led DGA in the South Thames Cleft Service over a 3-year period. DESIGN: Data were collected retrospectively over a 36-month period. RESULTS: Sixty-five children with cleft lip and/or palate required a DGA with the South Thames Cleft Service. The average age of the child was 7 years, and the average number of teeth treated under the general anesthetic was 9. Families traveled an average of 21 miles to access their child's care, and the referral-to-treat time was on average 14 weeks. CONCLUSION: Results highlight the need for DGA provision for children with clefts. Cleft centers need sufficient capacity for this service to prevent long wait times, and in view of distances traveled shared, care should be implemented with local providers.

Skeletal Maturation in Patients With Cleft Lip and/or Palate: A Systematic Review.

OBJECTIVE: The objective of this systematic review was to evaluate the evidence regarding skeletal maturation in patients with cleft lip and/or palate (CL/P) and to investigate whether the skeletal maturation is delayed in these patients. DESIGN: Systematic review. METHODS: Electronic and manual searches of scientific literature were conducted in 4 databases (MEDLINE, Embase, Cochrane Library, and Web of Science). Cohort studies that compared the skeletal maturation of patients with CL/P with that of children without CL/P were eligible for inclusion. The quality of included cohort studies was assessed using the Newcastle-Ottawa Scale. PATIENTS AND PARTICIPANTS: Patients of any sex and ethnicity with CL/P and children without CL/P were included in this systematic review. MAIN OUTCOME MEASURES: Difference in skeletal maturation between patients with CL/P and patients without CL/P. RESULTS: Thirteen retrospective cohort studies were included in this systematic review. Ten studies were considered of high quality and 3 were considered of general quality. The results of the included studies comparing skeletal maturation of patients with CL/P and children without CL/P were heterogeneous. CONCLUSION: Heterogeneity of skeletal maturation assessment methods, chronological age, sex, cleft type, and race may influence the final results of clinical studies on skeletal maturation in patients with CL/P. Overall, there is limited evidence to determine whether the skeletal maturation level of patients with CL/P is delayed compared to that of normal children. Further studies are needed to determine the skeletal maturation patterns in patients with CL/P.

The Online Attention to Cleft Lip and Palate Research: An Altmetric Analysis.

OBJECTIVES: To identify research articles related to cleft lip and/or cleft palate (CL/P) that generated the highest online attention. METHODS: Altmetric Explorer was used to identify the 100 articles with the highest Altmetric Attention Score (AAS). Descriptive and correlation statistics were performed to study the characteristics of these articles in relation to their publication data, research type and domain, number of Mendeley readers, and dimensions citations. Citation counts were extracted from Scopus and Google Scholar. RESULTS: The median AAS for the top 100 outputs was 22 (range from 12 to 458). The outputs were mostly discussed on Twitter (median = 8; range = 0-131). Topics discussing treatment and care for patients with CL/P accounted for 38% of the articles with the highest AAS followed by etiology and risk factors (32%). The majority of articles originated from the USA (46%) followed by Europe (16%) and the United Kingdom (15%). No significant differences were observed in AAS among different study designs, topic domains, journals' ranking and impact factor, and the number of citations in Scopus and Google Scholar. CONCLUSIONS: Researchers should consider use of social platforms to disseminate their work among scholars and nonscholars. Altmetrics can be combined with traditional metrics for a more comprehensive assessment of research impact.

Cleft Lip and/or Palate and Associated Risks in Lower-Middle-Income Countries: A Systematic Review.

OBJECTIVE: To identify and review published data on the risks associated with cleft lip and/or palate (CL/P) in lower-middle-income countries (LMICs). DESIGN: A systematic review of literature was performed on electronic databases using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols. Literature on risks associated with CL/P in LMICs, from 2010 to 2020, were included. RESULTS: Seventeen studies met the inclusion criteria. All studies adopted an observational study design. Biological and environmental risks were identified. Maternal and paternal age (n = 7) and low socioeconomic status (n = 5) were the most prominently associated environmental risk factors. A strong association was identified between family history of cleft (n = 7) and CL/P occurrence. CONCLUSION: Environmental risk factors are now being investigated more than biological risk factors in LMICs, aiding health care workers in the early identification of possible cumulative effects of risks in CL/P. Contextually relevant tools are recommended to promote early identification of at-risk infants.

Psychosocial Functioning Among Children With and Without Differences of Sex Development.

OBJECTIVE: To assess health-related quality of life (HRQoL), psychosocial adjustment, and family functioning of children with differences of sex development (DSD) or cleft lip and/or palate (CL/P). METHODS: In this cross-sectional study, parents of children with DSD (n = 67), CL/P (n = 121), and a comparison group of unaffected youth (n = 126) completed standardized measures assessing family functioning and their children's HRQoL and psychosocial adjustment. Medical charts were abstracted for youth with either congenital condition. RESULTS: Children with DSD were rated as having significantly lower HRQoL and greater internalizing problems compared to youth with CL/P and unaffected youth. Children in the DSD group were also significantly more likely to fall into the clinical risk categories for total and internalizing problems relative to the CL/P and unaffected groups. Caregivers of children with DSD were significantly more likely to endorse items about child suicidality compared with caregivers in the CL/P and unaffected groups. No significant differences were found between groups for externalizing problems or the expressiveness domain of family functioning; parents of children with DSD reported significantly less family conflict relative to the other groups and greater cohesion relative to the unaffected group. Conclusions Youth with DSD appear to be at greater risk for psychosocial problems relative to children with CL/P and unaffected peers. Results underscore the need for integrated interdisciplinary care and ongoing psychosocial risk monitoring in youth with DSD.

Hypermethylation of WNT3A gene and non-syndromic cleft lip and/or palate in association with in utero exposure to lead: A mediation analysis.

OBJECTIVES: We aim to investigate association between WNT3A methylation and risk of non-syndromic cleft lip and/or palate (NSCL/P), and examine mediating effect of WNT3A methylation on the association of NSCL/P and lead (Pb) exposure in fetuses. METHODS: DNA methylation of WNT3A in umbilical cord blood was determined among 59 NSCL/P cases and 118 non-malformed controls. Mediation analysis was performed to evaluate the potential mediating effect of WNT3A methylation on association between concentrations of Pb in umbilical cord and risk for NSCL/P. Additionally, an animal experiment in which cleft palates were induced by lead acetate was conducted. RESULTS: The overall average methylation level of WNT3A was significant higher in NSCL/P cases as compared to controls. The risk for NSCL/P was increased by 1.90-fold with hypermethylation of WNT3A. Significant correlation was observed between concentrations of Pb in umbilical cord and methylation level of WNT3A. The hypermethylation of WNT3A had a mediating effect by 9.32% of total effect of Pb on NSCL/P risk. Gender-specific association between WNT3A methylation and NSCL/P was observed in male fetuses, and the percentage of the mediating effect increased to 14.28%. Animal experiment of mice showed that maternal oral exposure to lead acetate may result in cleft palate in offspring. CONCLUSION: Hypermethylation of WNT3A was associated with the risk for NSCL/P and may be partly explain the association between exposure to Pb and risk for NSCL/P. The teratogenic and fetotoxic effects of Pb were found in mice.

Parents' linguistic strategies in interaction with their children with history of cleft lip and/or palate.

BACKGROUND: Cleft lip and/or palate (CL/P) presents a rather complex challenge that requires understanding beyond biological or clinical perspective. Even though inaccuracies in speech articulation are the common consequences of CL/P, individuals with repaired CL/P are likely to experience other language-associated issues. Studies on social interaction have generally reported the children to be passive interlocutors, despite having their surgical treatment at the early stages of life. AIMS: This study aims to describe the linguistic strategies that parents employ when interacting with their repaired CL/P child. How parents allocate the next turn of speaking to their repaired CL/P child will be specifically examined. METHODS & PROCEDURES: Three parent-child pairs with each child having repaired CL/P were selected to participate in the study. Guided by the principles of Conversation Analysis, their everyday interactions in their homes were video-recorded and transcribed according to the Jefferson System of Transcription Notation (2004). The transcriptions were subsequently analysed in order to highlight the linguistic strategies. OUTCOMES & RESULTS: Three main linguistic strategies are identified in the parents' turns when they allocate the next turn of speaking to their repaired CL/P child. Specifically, parents' turns are constructed through interrogative sentences in addition to using emphasis words and repeated elicitation of responses from their child. CONCLUSION & IMPLICATIONS: Parents' linguistic strategies are found to be restrictive as they limit children's active participation. Consequently, the interaction becomes asynchronous rather than synchronous, which could otherwise benefit children's language development. Findings provide information on how parents can be supported in order to foster a positive growth of the children's language development through everyday interactions. WHAT THIS PAPER ADDS: What is already known on the subject Even after repair surgery, children with CL/P may experience poor language performance that is not limited to inaccuracies in speech articulation. Studies within the area of pragmatics have consistently shown the CL/P children to be passive interlocutors. What this paper adds to existing knowledge This study describes the linguistic strategies employed by parents when they allocate the next turn of speaking to their repaired CL/P child. Parents are found to employ three main strategies: framing the turn into an interrogative sentence, deploying emphasis words and repeatedly eliciting responses. The findings suggest that such strategies limit the interactions, making them asynchronous and potentially unconducive to the positive growth of the child's language development. What are the potential or actual clinical implications of this work? In addition to providing speech treatment to children affected with CL/P, parents, especially those belonging to collectivist groups that are sympathetic to authoritarian parenting styles, can also be informed or trained on other ways to communicate with such individuals.

Assessment of craniofacial maturation in preadolescents with cleft lip and/or palate using the cervical vertebral maturation method.

OBJECTIVES: Aberrant growth of the maxillomandibular complex in patients with cleft lip and/or palate (CL/P) can be managed with dentofacial orthopaedics. However, no consensus has been reached regarding timing and evolution of the maturational stages. Therefore, the aim of this study is to determine if patients with CL/P have an increased risk for delayed craniofacial maturation. MATERIALS AND METHODS: A sample of 246 cleft patients and 210 non-affected individuals was retrospectively compiled. Cephalometric radiographs taken between the ages of 10 and 14 years (girls) and 12 and 16 years (boys) were collected and assessed with the cervical vertebral maturation (CVM) method. RESULTS: In boys, no significant association between the presence of CL/P and a CVM score of CS3 or higher was observed in any age subsample. This was similar for a CVM score of CS5 or higher. Girls in the CL/P group had a significant lower probability of having a CVM score of at least CS3 in the subsample with age 11 to 12 (p = 0.001) and a borderline non-significant lower probability of having a CVM score of at least CS5 in the subsample with age 12 to 13 (p = 0.055). CONCLUSIONS: The current study demonstrated a discrete delay in skeletal maturation before the pubertal growth spurt of (pre)adolescents with CL/P, especially girls. This delay was less apparent at the end of the pubertal growth spurt. CLINICAL RELEVANCE: This research suggests that the craniofacial maturational stages relevant for dentofacial orthopaedic treatment in cleft patients, especially girls, occur at higher chronological age. Further research must quantify this delay, investigate its clinical significance, and determine its effect on the timing of dentofacial orthopaedic treatment.

Australian Orthodontists Utilization and Attitude Toward a Government Funded Cleft Scheme.

OBJECTIVES: To (1) survey Australian orthodontists about their involvement with a government-funded scheme for patients with clefts, the Medicare Cleft Lip and Cleft Palate Scheme (MCLCPS) and (2) investigate their attitude toward treating patients with clefts and their training in this respect. DESIGN: A 13-question online survey was distributed to members of the Australian Society of Orthodontists. The survey gathered information regarding respondent demographics, the number of MCLCPS-eligible patients seen in the past 12 months and usual billing practices. RESULTS: A total of 96 complete responses were obtained. About 70% of respondents had treated MCLCPS-eligible patients in the past 12 months and 55% saw between 2 and 5 patients during this time. The likelihood of treating patients with clefts increased by a factor of 4.8 (95% CI: 1.2-18.9) if practicing outside of a capital city and 1.5 times for each decade increase in orthodontist's age (95% CI: 1.0-2.2). The MCLCPS was utilized by 81% of orthodontists with 26% of these respondents accepting rebate only. Most orthodontists felt their university training could have better prepared them to treat patients with clefts. A minority of orthodontists felt that a rebate increase would make them more likely to treat these patients. CONCLUSIONS: Australian orthodontists who treat patients with clefts tend to be older and work outside of capital cities. The decision to treat these patients tends to not be financially motived. Specialty orthodontic training programs could improve the preparedness of their graduates to treat patients with clefts.

Experiences of Canadian Parents of Young Children With Cleft Lip and/or Palate.

PURPOSE: Prior literature has described the perspectives of parents of young children with clip lip and/or palate; however, few studies have described parents' experiences within a Canadian health care system. This study aims to better understand the experiences of parents of young children with cleft lip and/or palate seen at a Canadian tertiary care center and identify their care needs. DESIGN: In-depth semistructured interviews. SETTING: Pediatric tertiary care center. PARTICIPANTS: Parents of children younger than 7 years of age with cleft lip and/or palate. RESULTS: From 14 interviews, 4 themes were identified. The diagnosis theme was associated with reactions, timing, and search for information. Key concerns within the theme of physiology and function were around feeding and speech. The health care experience theme included burden of care, peripheral hospitals and services, the cleft lip and palate clinic, and clinicians. The psychosocial theme included parents' reactions to their child's pain, coping strategies, family interactions, and school/day care experiences. Parents felt care could be improved by having: access to good information and community speech therapists, shorter appointment wait times, a peer support network, and increased cleft knowledge within their child's school and peer groups. CONCLUSIONS: The experience of parents of children with cleft lip and/or palate is complex but can be organized into 4 themes. Clinics may consider suggestions offered by parents to improve care. Future work should address parents' needs and aim to create a parent-reported quality-of-life measure specific to parents of young children with cleft lip and/or palate.

Congenital Heart Diseases Associated With Cleft Lip and Palate and Its Impact on Surgical Treatment Planning of Patients With Cleft Lip and Palate-A Cross-Sectional Study.

OBJECTIVES: The aim of this study is to know the prevalence, type of congenital heart diseases (CHDs), and its association with cleft lip and/or palate and to know the impact of CHDs on surgical treatment planning of cleft lip and palate from a craniofacial hospital specializing in orofacial clefts, head and neck cancer, and trauma management. DESIGN: A total of 1381 patients with nonsyndromic cleft lip and palate were included in the study. This is a hospital-based retro-prospective case record analysis. The data were collected from clinical records of the patients which included clinical, chest radiographic and 2D echocardiographic findings. Total incidence of CHDs and its impact on treatment planning was evaluated using κ statistics and χ2 test. RESULTS: There were 32 (2.32%) cleft lip and palate patients with CHDs. In 2 patients, cleft surgery was delayed by 6 to 9 months to allow the defect to decrease in size. Subacute bacterial endocarditis prophylaxis was administered in 7 patients before cleft surgery. Cardiac surgery was advised prior to cleft surgery in 3 patients. Sixteen patients with CHDs were not taken for cleft surgery considering the potential risk to the patient's life as they had multiple cardiac anomalies. There were no intraoperative and postoperative complications in these patients. CONCLUSION: The results emphasize the association between clefting and CHD. The collected data suggest that there should be careful examination of children with cleft lip and palate for signs of heart disease. This could significantly reduce the morbidity/mortality of cleft lip and palate surgery making it more predictable and safer.

Factors Affecting High Caries Risk in Children With and Without Cleft Lip and/or Palate: A Cross-Sectional Study.

OBJECTIVE: The aim of the study was to analyze the caries protective factors, salivary parameters, and microbial counts in high caries risk children with cleft lip and/or palate (CL/P). DESIGN: This was a cross-sectional study. SETTING: This study was conducted in a tertiary health care teaching hospital in New Delhi, India. PARTICIPANTS: The study was conducted in 40 children, 20 with CL/P and 20 without aged between 5 and 12 years. METHODS: Children with 2 or more caries lesions in both groups were included in this study. Demographic details, dental caries of affected teeth (World Health Organization criteria for Decayed Missing Filled Teeth [WHO-DMFT] and International Caries Detection and Assessment System [ICDAS II]), caries protective factors, salivary parameters, and microbial counts were recorded by one calibrated investigator. MAIN OUTCOME MEASURES: Caries protective factors, salivary parameters, and microbial profile. RESULTS: The Chi-square (χ2) test and Pearson correlation were used for statistical analysis. All the children participating in the study brushed their teeth only once in a day and consumed sweets more than twice a day. None of the children had ever received fluoride varnish. Resting saliva had a low buffering capacity in 80% of children with CL/P and 95% of children without CL/P. Microbial assessment of stimulated saliva showed that with the increases in the numbers (DMFT scores ≥4) and severity (ICDAS codes from 1-2 to 5-6) of caries lesions, both Streptococci and Lactobacilli counts were ≥105 colony-forming units/mL of saliva in the both groups. CONCLUSIONS: Children with CL/P showed limited access to caries protective measures and low buffering capacity in resting saliva, along with elevated levels of salivary Streptococci and Lactobacilli in stimulated saliva.

Intelligibility in 3-Year-Olds With Cleft Lip and/or Palate Using the Intelligibility in Context Scale: Findings from the Cleft Collective Cohort Study.

OBJECTIVE: To provide comparison data on the Intelligibility in Context Scale (ICS) for a sample of 3-year-old English-speaking children born with any cleft type. DESIGN: Questionnaire data from the Cleft Collective Cohort Study were used. Descriptive and inferential statistics were carried out to determine difference according to children's cleft type and syndromic status. PARTICIPANTS: A total of 412 children born with cleft lip and/or palate whose mothers had completed the ICS when their child was 3 years old. MAIN OUTCOME MEASURE(S): Mothers' rating of their children's intelligibility using the ICS. RESULTS: The average ICS score for the total sample was 3.75 (sometimes-usually intelligible; standard deviation [SD] = 0.76, 95% CIs = 3.68-3.83) of a possible score of 5 (always intelligible). Children's speech was reported to be most intelligible to their mothers (mean = 4.33, SD = 0.61, 95% CIs = 4.27-4.39) and least intelligible to strangers (mean = 3.36, SD = 1.00, 95% CIs = 3.26-3.45). There was strong evidence (P < .001) for a difference in intelligibility between children with cleft lip only (n = 104, mean = 4.13, SD = 0.62, 95% CIs = 4.01-4.25) and children with any form of cleft palate (n = 308, mean = 3.63, SD = 0.76, 95% CIs = 3.52-3.71). Children born with cleft palate with or without cleft lip and an identified syndrome were rated as less intelligible (n = 63, mean = 3.28, SD = 0.85, 95% CIs = 3.06-3.49) compared to children who did not have a syndrome (n = 245, mean = 3.72, SD = 0.71, 95% CIs = 3.63-3.81). CONCLUSIONS: These results provide preliminary comparative data for clinical services using the outcome measures recommended by the International Consortium for Health Outcomes Measurement.