Columbia-Suicide Severity Rating Scale (C-SSRS) Reveals High Rates of Suicidality in 602 Patients With Cleft and Craniofacial Conditions.

INTRODUCTION: Little is known about rates of suicidal ideation and behavior among youth with cleft lip and/or palate (CLP) and other craniofacial conditions. METHODS: Records of patients ages 6 and older who were administered the Columbia-Suicide Severity Rating Scale (C-SSRS) Lifetime Version during routine multidisciplinary cleft or craniofacial team visits between 2019 and 2023 were examined. Demographics information, C-SSRS data, and diagnoses were assessed with statistics including t tests, the Fisher exact test, and odds ratios. RESULTS: A total of 1140 C-SSRS questionnaires across 602 (433 CLP and 169 craniofacial) patients with an average age of 11.2±3.7 years were included. Eighty-four (13.6%) patients endorsed lifetime suicidal ideation, 9 (1.5%) had at least one instance of suicidal behavior, 30 (5.0%) endorsed nonsuicidal self-injury, and 2 (0.3%) engaged in self-injurious behavior. Compared with CLP, those with other craniofacial conditions had similar odds of endorsing suicidal ideation and behavior ( P ≥0.05). Compared with those with isolated cleft palates, CLP had greater odds of endorsing suicidal ideation and behavior, though those differences were not significant ( P ≥0.05). Incidence of suicidality was unchanged before, during, and after the COVID-19 pandemic ( P ≥0.05). Dividing patients by sex or insurance type revealed no difference in suicidality ( P ≥0.05). CONCLUSION: Patients with CLP and craniofacial conditions have a high incidence of suicidal ideation and behavior, though levels are similar between these groups. Suicidality in these patients was not negatively impacted by the COVID-19 pandemic. Early identification of safety risks and psychosocial challenges through regular screening can facilitate connection with appropriate clinical interventions.

Translation and validation of the French version of the child perceptions questionnaire for children aged 11 to 14 years old (CPQ11-14) short-form.

OBJECTIVES: The COHQoL is a set of questionnaires used to evaluate the impact of oral health on children's quality of life. Although the CPQ8-10 and the P-CPQ have been translated and validated in French, the CPQ11-14 14 has not yet been validated. The aim was to develop a French version of the CPQ11-14 16-items. MATERIALS AND METHODS: The French version of CPQ11-14 was obtained by a forward-backward translation process and pretested. The final version was tested on children aged 11-14 and divided into three groups: children with orofacial clefts, children with rare dental diseases other than clefts, and children without anomalies. We conducted a cross-sectional study and evaluated the reliability with test-retest and internal consistency, and the questionnaire validity with construct validity and discriminant validity. We performed an Exploratory Factory Analysis (EFA). RESULTS: 187 children tested the questionnaire. The ICC of the test-retest was 0.76 and the Cronbach's alpha was 0.77. The correlation between the CPQ11-14 and self-assessment of oral health and general well-being was > 0.2. Patients with orofacial clefts and rare diseases had significantly higher scores for overall short-form CPQ11-14. The EFA revealed six factors. CONCLUSION: The French CPQ11-14 is valid to assess the impact of oral health on children's quality of life. CLINICAL RELEVANCE: The translation of this questionnaire into French will enable us to assess the impact of oral health on the quality of life of adolescents. This questionnaire complements the 8-10 years version of the CPQ, as well as the parental version that can be used in conjunction with the questionnaire.

Are parental sociodemographic factors, oral health knowledge and practices linked to the oral health habits of their children with cleft lip and palate?

OBJECTIVE: Children with cleft lip and palate (CLP) have a greater risk of dental caries. The parents' knowledge and attitudes may have an impact on their children's oral health and dietary habits. Therefore, the aim of this study was to assess the socio-demographic characteristics, oral health knowledge, oral health behaviours, and habits of the parents in addition to the relationship with the oral health and dietary practices of their children with CLP. MATERIAL AND METHODS: The parents of 343 patients with CLP participated in the study. An online questionnaire with 52 questions regarding sociodemographic characteristics, oral health and oral hygiene practices was presented to them. RESULTS: Parents with higher level of education had better oral health knowledge (p < 0.05). Logistic regression analysis showed that the factors affecting the child's tooth brushing habits were the mother's age (odds ratio [OR] = 1.071, 95% confidence interval [CI]: 1.062-1.153), the father's employment status (OR = 2.089, 95%CI: 1.065-4.097), and the mother's last dental visit (OR = 1.995, 95%CI: 1.119-3.557). The factors affecting the child's toothpaste usage were the mother's age (OR = 1.106, 95%CI: 1.030-1.114), the father's employment status (OR = 2.124, 95%CI: 1.036-4.354), and the mother's last dental visit (OR = 2.076, 95%CI: 1.137-3.79). CONCLUSIONS: Parental factors have a significant influence on the oral health-related behaviours of children with CLP.

Adolescents with orofacial clefts: understanding their experiences.

OBJECTIVE: To understand the experience of young people with orofacial clefts regarding life as an adolescent. METHODS: Descriptive, qualitative study, developed in a Brazilian public and tertiary hospital, a reference center in the care of patients with craniofacial anomalies and related syndromes, between February and April 2019. The sample was defined by theoretical saturation. The following inclusion criteria were established: age between ten and 19 years old and having previously operated on orofacial cleft (lip and/or palate). Individuals with fissure associated with syndromes or other malformations were excluded. Data collection was performed through semi-structured interviews, which were audio recorded and transcribed in full. The trigger element was: how has it been for you to experience your adolescence? For the construction of the results, content analysis was used in the thematic modality. RESULTS: Seventeen adolescents participated. From the speeches, three categories were revealed: interacting socially, feeling supported, and experiencing and facing prejudice. CONCLUSIONS: The biopsychosocial and conflicting complexity that adolescents with orofacial clefts experience was noticed, as well as the importance of receiving support and establishing modalities of situational coping.

Correlation of Orthognathic Surgical Movements to Perception of Facial Appearance in Patients With Cleft Lip and Palate.

STUDY DESIGN: Cephalometric scans were compared before and after surgery to assess the degree of correction. Correlations between skeletal movements and survey outcomes were determined using multivariate regression analysis. OBJECTIVE: This study aims to identify relationships between subjective observer-reported improvements in esthetics and emotional appearance with specific surgical movements. METHODS: Ten patients at a single tertiary institution (average age: 18.1 ± 0.8), 9 males and 1 female, underwent orthognathic repair and had comprehensive cephalometric records. Standardized anterior posterior and lateral pre and postoperative photographs of patients were included in a survey to clinicians to assess noncognitive domains on a Likert Scale (1-10). CLEFT-Q was administered to gauge patient satisfaction in categories of appearance, speech, and quality of life. RESULTS: Per clinicians, multiple domains increased including facial attractiveness (4.1 ± 0.7 versus 7.3 ± 0.7, P < 0.001), friendliness (4.5 ± 0.4 versus 7.3 ± 0.5, P < 0.001), confidence (4.1 ± 0.4 versus 7.1 ± 0.4, P < 0.001), and recommendation for surgery decreased (8.9 ± 0.1 versus 3.6 ± 0.5, P < 0.001). Speech distress decreased with increased SNA and convexity, whereas Psychological and Social scores decreased with an increased ANB. Functional eating and drinking scores increased with maxillary depth. CONCLUSIONS: Orthognathic surgery improves many noncognitive domains in patients with cleft lip and palate as assessed by both patients and clinicians on all aspects of facial attractiveness and perception. These findings demonstrate objective bases of skeletal adjustments for perceived improvements in facial appearance and emotion.

Orthodontic Status and Association with Oral-Health-Related Quality of Life-A Study of 16-Year-Old Norwegians with a Cleft Lip and Palate.

OBJECTIVE: To assess the association between clinical orthodontic indicators and oral-health-related quality of life, adjusted for socio-demographic factors, focusing on 16-year-old patients with cleft lip and/or palate (CL/P). PARTICIPANTS: One hundred and twenty-two patients with CL/P, representing cleft-lip (CL), cleft-palate (CP), unilateral/bilateral cleft-lip-palate (UCLP/BCLP), enrolled in the national CLP-Team, Bergen, Norway. METHOD: A cross-sectional study by two orthodontists assessing the number of teeth, intermaxillary sagittal relation (ANB-angle), dental arch and occlusion of 16-year-old patients with CL/P. All completed a digital questionnaire including self-reported socio-demographic variables, OHIP-14 questionnaire and dental aesthetics. Cross-tabulations with Pearson's Chi-square test were used to identify associations between self-reported OHRQoL and socio-demographic and clinical indicators. Multiple variable analyses were conducted with binary logistic regression analysis using the odds ratio (OR) and 95% confidence interval (CI) to assess associations between OHRQoL and clinical indicators adjusted for socio-demographic variables. Ethical approval was granted by the regional ethics committee. RESULTS: Patients with UCLP and BCLP had poorer clinical indicators compared to patients with CL and CP (p < 0.05). A total of 80% of the patients had OHIP-14 > 0. The highest oral impact was reported for psychological domains and articulation and the least for functional domains. Respondents with BCLP and those with poor intermaxillary relationships (ANB < 0°) reported a high impact on OHRQoL (p < 0.05). No statistically significant associations between other clinical indicators and socio-demographic variables such as gender, educational aspiration, and place of residence were reported. CONCLUSIONS: The study revealed an association between severe cleft diagnosis, missing teeth, misaligned teeth, negative overjet, and poor OHRQoL, but a statistically significant association was found only between OHRQoL and poor intermaxillary sagittal relations (unfavorable profile). To improve OHRQoL among patients with clefts, there is a need for an individual follow-up and prioritization of oral healthcare.

Language abilities and associated risk factors of school-aged children with cleft lip and palate.

Previous research on children with cleft lip and palate (CLP) reported unequivocal findings with regard to language skills, with the majority suggesting persistent difficulties in early childhood. While expressive language deficits improved with age, receptive language skills were consistently lower than peers. Further study investigating the long term and persistent impact of language deficits amongst school-aged children with CLP is warranted. This was a cross-sectional study, aimed to determine the language abilities and explore the associated risk factors in Malay speaking children with CLP in Malaysia. Fifty-two children with CLP aged 7- to 12-year-old participated in this study. Language skills were assessed using the Malay Preschool Language Assessment Tool and the adapted Subway-School-age Language & Assessment Measures. Findings revealed that 14 (26.92%) school-aged children with CLP demonstrated language deficits. Children with CLP performed significantly poorer in reading comprehension (p = 0.031) and narrative (p = 0.026) skills. It was found that the age significantly influenced total receptive language score (ß = 0.421, p = 0.003) and total expressive language score (ß = 0.477, p = 0.000). Findings suggested that children with CLP may continue to have persistent language deficits into their school-age years. Recommendations for regular monitoring of language performance especially for those from younger age groups is warranted to help maximize school attainment.

Self-perceived oral health and orofacial aesthetics of cleft patients.

PURPOSE: To evaluate the self-perceived oral health and aesthetics of the dentition and jaw in patients with different types of oral cleft, measured by patient-reported outcome measures (PROMs). Additionally, to compare the results of the PROMs between cleft lip and or/palate (CL/P) patients and non-affected controls. METHODS: 420 CL/P patients treated at the cleft team of the Erasmus Medical Center, Rotterdam, The Netherlands, were included, and 138 non-cleft patients were recruited as control-group. Patient's perceptions were retrospectively evaluated using the CLEFT-Q Teeth for dental aesthetics at ages 8, 12 and 22, CLEFT-Q Jaw for jaw aesthetics at ages 12 and 22, and the Child Oral Health Impact Profile-Oral Symptoms Subscale (COHIP-OSS) for oral health at ages 8 and 12. One-way ANOVA was used to compare differences in oral health and aesthetic perceptions among age-groups, cleft types, as well as between cases and controls. RESULTS: CL/P patients were significantly less satisfied than controls with their dental aesthetics (p = 0.001). CL/P patients reported significantly lower satisfaction on CLEFT-Q Teeth scores at ages 8 and 12, than at 22 years (p < 0.001). Patients with the most extensive cleft phenotype, Cleft Lip and Palate (CLAP), reported lowest satisfaction on the CLEFT-Q Teeth. No differences in perceptions of oral health nor in aesthetics of the jaw were found in the different cleft types, ages, nor in study versus control group. CONCLUSION: This study found differences in self-perceived dental aesthetics: CL/P patients are less satisfied than non-affected controls. CLAP patients are least satisfied, but satisfaction increases with age.

Children's Visual Perception of Facial Scarring and Cleft Lip Deformity Using Eye Tracking Data.

OBJECTIVE: The purpose of this study is to determine children's perception of secondary cleft lip deformity (SCLD) using objective eye tracking technology and subjective responses on a survey to understand pediatric perceptions of facial scarring. DESIGN: Cross-sectional study of participants aged 5-17 years old. METHODS: Participants viewed images of children's faces with an eye tracking device. Sixteen images were displayed, 12 with unilateral SCLD and four with no facial scarring. Eye tracking data were obtained. Gaze samples were analyzed for areas of interest (AOIs). Immediately after viewing each image, participants answered two survey questions relating to facial asymmetry attitude toward the child pictured. For analysis, participants were divided into age groups. RESULTS: A total of 259 participants were enrolled (42.5% female). Mean age was 10.5 years and 78% identified as White. In all age groups, total fixation time was greater for SCLD compared to control images. Early elementary age children spent significantly less time assessing the nose AOI compared to other groups, and also spent the least total fixation time and had the lowest visit count on all AOIs. Subjective survey questions showed similar trends with elementary age not noticing facial asymmetry compared to older age groups. CONCLUSION: This study demonstrates the successful use of eye tracking technology in children as young as 5 years old. This study suggests that SCLD is perceived as less noticeable in elementary age children and becomes more noticeable to older groups. Understanding peer perception on SCLD from this study may impact decision on revision surgery for SCLD. LEVEL OF EVIDENCE: IV Laryngoscope, 134:2726-2733, 2024.

Evaluation of Anxiety in Turkish Parents of Newborns with Cleft Palate with or Without Cleft Lip.

OBJECTIVE: (1) To compare anxiety between parents of newborns with cleft lip and palate (CLP), isolated cleft palate (CP), and healthy newborns and (2) to evaluate anxiety between parental dyads within these groups. DESIGN: A cross-sectional study. SETTING: University Hospital. PARTICIPANTS: Surveys were completed by 20 mothers and 20 fathers of newborns with CLP, 21 mothers and 21 fathers of newborns with CP, and 23 mothers and 23 fathers of healthy newborns (controls). MAIN OUTCOME MEASURE: The State-Trait Anxiety Inventory (STAI) assessed parental anxiety. Mothers of newborns with a cleft reported on concerns regarding cleft-related issues and facial appearance. RESULTS: State and trait anxiety were generally in the moderate range for parents of newborns with a cleft, while control parents had low state anxiety and moderate trait anxiety. Mothers of newborns with CP and CLP had significantly higher state and trait anxiety levels than control mothers (p < .05). Fathers of newborns with CLP had a higher state anxiety level than control fathers. When maternal and paternal anxiety was compared within the groups, only trait anxiety scores were significantly higher in mothers of newborns with CLP than that of fathers (p < .05). More than half of mothers of newborns with a cleft were concerned about their newborn's feeding, speech, and palate. CONCLUSIONS: Parents of children with a cleft may need psychological support in the early postnatal period. It is important for neonatal cleft team providers to help reduce parental anxiety and educate families about cleft care, with a focus on feeding.

Being Normal yet Different: A Qualitative Study on the Dualistic Experience of Living With Unilateral Cleft Lip and Palate.

The aim of the present study was to describe the experiences of young adults living with cleft lip and palate (CLP) and to explore potential gender differences.A descriptive qualitative study was designed involving semi-structured interviews. The interviews were analyzed using qualitative content analysis, as described by Graneheim and Lundman.A total of 9 women and 8 men, aged 22 to 26 years with UCLP.The main theme identified was: the duality of living with a cleft-being normal yet different, and 2 subcategories: "My cleft and me" and "My cleft and the World." The participants described themselves as normal yet different, both in relation to themselves and in relation to others. They also stated that gender norms regarding appearance affected their lives and how they saw the cleft.This study adds to the growing body of qualitative research on CLP. It highlights the dualistic experiences of feeling normal and different at the same time. The interviews indicated that this dualism was based on context and gender, showing the psychological complexity of an individual. The clinical implications of this study emphasizes the need of a person-centered care approach in the cleft care setting where the clinicians are aware of the potential dualistic experience that also may differ over time that individuals with cleft can experience. This can also help clinicians better understand and help patients reduce distress and strengthen positive coping mechanisms.

Prevalence and Factors Associated with Behavioral Problems in 5-Year-Old Children Born with Cleft Lip and/or Palate from the Cleft Collective.

OBJECTIVES: To determine the UK prevalence of behavioral problems in 5-year-old children born with isolated or syndromic cleft lip and/or palate (CL/P) compared to the general population and identify potentially associated factors. DESIGN: Observational study using questionnaire data from the Cleft Collective 5-Year-Old Cohort study and three general population samples. MAIN OUTCOME MEASURE: The Strengths and Difficulties Questionnaire (SDQ). PARTICIPANTS: Mothers of children (age: 4.9-6.8 years) born with CL/P (n = 325). UK general population cohorts for SDQ scores were: Millennium Cohort Study (MCS) (n = 12 511), Office of National Statistics (ONS) normative school-age SDQ data (n = 5855), and Avon Longitudinal Study of Parents and Children (ALSPAC) (n = 9386). RESULTS: By maternal report, 14.2% of children born with CL/P were above clinical cut-off for behavioral problems, which was more likely than in general population samples: 7.5% of MCS (OR = 2.05 [1.49-2.82], P < 0.001), 9.8% of ONS (OR = 1.52 [1.10-2.09], P = 0.008), and 6.6% of ALSPAC (OR = 2.34 [1.70-3.24], P < 0.001). Children in the Cleft Collective had higher odds for hyperactivity, emotional and peer problems, and less prosocial behaviors. Maternal stress, lower maternal health-related quality of life and family functioning, receiving government income support, and maternal smoking showed evidence of association (OR range: 4.41-10.13) with behavioral problems, along with maternal relationship status, younger age, and lower education (OR range: 2.34-3.73). CONCLUSIONS: Findings suggest elevated levels of behavioral problems in children born with CL/P compared to the general population with several associated maternal factors similar to the general population.

"Challenges and concerns faced by parents of a group of Egyptian children with cleft lip/palate: a qualitative study".

BACKGROUND: Cleft lip and palate are the most common developmental anomalies that affect the mouth and related structures. They can both affect children physiologically, socially, and functionally and lead to psychological distress in their parents. The present study aims to understand the challenges parents of cleft lip and palate patients face in Egypt, elucidate how they cope with these challenges, and assess their concerns for the future. METHODS: For the present phenomenological qualitative exploration, the parents of cleft lip and palate patients attending the cleft care clinic were invited to participate in the study through face-to-face recruitment at the clinic. An interview guide about the research question was developed to include standardized open-ended questions providing a framework for structured discussions. The interviews were audio-recorded after obtaining written informed consent from participants then collected data were transcribed for data analysis. RESULTS: Of the 12 participants, there were nine mothers and three fathers. Their children's ages ranged from 1.5 years to 19 years and had different presentations of cleft lip and palate from unilateral cleft lip to complete bilateral cleft lip and palate. Feeding difficulty was one of the main challenges encountered by the parents. At the same time, fear of being subjected to bullying was the main concern for the future of their children. Six themes were noted that were continually reported: Health & Wellbeing; Parental emotions; Parental attitudes & behaviors; Financial aspects; Relationship aspects; and Career/Education. CONCLUSIONS: There were 4 factors that directly impacted the themes, namely: the type of cleft, gender of the child, gender role of the parent, and the age of the child impacted the parental concerns and the challenges faced under the influence of sociocultural beliefs and existing support systems.

The burden of psychiatric disorders associated with orofacial cleft pathology among children in Ontario, Canada.

BACKGROUND: Individuals with orofacial cleft (OFC) may be at a higher risk of developing psychiatric disorders (PD) than the general population. We determined the risk of psychiatric diagnoses in children with OFC in Canada. METHODS: This population-based retrospective cohort study used health administrative data from the province of Ontario, Canada. Children with OFC who were born between April 1, 1994, and March 31, 2017, in Ontario were matched to five non-OFC children based on sex, date of birth, and mother's age. We determined the rate of events and time-to-event for first diagnosis of PD in children aged ≥ 3 years (y), and for intellectual developmental delay (IDD) from birth. Risk factors for PD and IDD were assessed using 1-way ANOVA for means, Kruskal-Wallis for medians, and the χ2 test for categorical variables. OUTCOMES: There were 3051 children with OFC (matched to 15,255 controls), of whom 2515 patients with OFC (12,575 controls) had a complete follow-up to the third birthday. Children with OFC were more likely to have PD than controls (54.90 vs. 43.28 per 1000 patient-years, P < .001), with a mean age to first diagnosis of 8.6 ± 4.2 y. The cleft palate group had the highest risk (HR 1.33, 95% CI 1.18-1.49). Children with OFC also had a higher risk of IDD than non-OFC children (27.78 vs. 3.46 per 1000 patient-years, p < .001). INTERPRETATION: Children born with OFC in Ontario had a higher risk of psychiatric diagnosis and IDD compared to controls. Further research is also required to better understand the predictors of variation in risk, including geographic location and the presence of congenital abnormalities, and identify potential areas for intervention. EVIDENCE RATING SCALE FOR PROGNOSTIC/RISK STUDIES: Level II.

'Sometimes I feel sad': A qualitative study on children's perceptions with cleft palate speech and language therapy.

BACKGROUND: Evidence-based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence-based speech therapy. Much less is known about how children perceive cleft speech therapy. AIMS: The purpose of the current qualitative study was to investigate the perceptions, emotions and expectations of Flemish-speaking Dutch children with a cleft (lip and) palate (CP ± L), aged 5-12 years, with regard to the speech therapy they receive. In this study, a focus was made on speech therapy to eliminate compensatory cleft speech errors. METHODS & PROCEDURES: Six children with a CP ± L, aged between 5 and 12 years, were included in this study. Child-friendly semi-structured interviews were conducted using a participatory, art-based qualitative approach. This means that the 'play and puppets technique' and 'draw-write and photo-elicitation technique' were used to guide the children through the interviews. Data derived from these interviews were analysed using an inductive thematic approach. Trustworthiness of the data was achieved by applying researcher triangulation, negative case analysis and an audit trail. OUTCOMES & RESULTS: Analyses of the interviews revealed three major themes of importance to the children: (1) treatment values, (2) treatment practices and (3) treatment outcomes. Each theme was divided into different subthemes. The theme 'treatment values' consisted of the subthemes expectations and emotions around therapy and interference with daily living. Information flow, therapy content, confirmation and rewards, parents' attendance, therapy intensity, and homework were subthemes of the major theme 'treatment practices'. The theme 'treatment outcomes' was divided into two subthemes, namely speech improvement and peers' reactions. CONCLUSIONS & IMPLICATIONS: Most children had positive attitudes towards speech therapy: it was 'something they liked' and 'something fun'. If children had negative attitudes they were related to having a fear of making mistakes during therapy. Children had clear expectations of the purpose of speech therapy. Speech therapy should 'help' improve their speech and make it more understandable to others. The children in this sample made some suggestions to decrease the experienced burden related to speech therapy. The results of this study will help to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L. WHAT THIS PAPER ADDS: What is already known on the subject Evidence-based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients and their families about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence-based speech therapy. Different studies investigated the perspectives of SLPs and parents with regard to cleft palate speech therapy. However, much less is known about the children's own experiences with and perceptions around this speech therapy. What this study adds to existing knowledge This study used a qualitative research design to investigate the perceptions, emotions and expectations of children with a cleft (lip and) palate, aged 5-12 years, with regard to the speech therapy they receive. Speech therapy needed to focus on the elimination of compensatory speech errors. This study provides knowledge on the speech therapy-related experiences of children with a cleft palate. What are the potential or actual clinical implications of this work? Children in this sample made some concrete suggestions to decrease the experienced burden related to cleft speech therapy, for example, integration of school work during therapy sessions and practising on the level of spontaneous speech. The results of this study help us to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L.

HOW PRO'S CAN CONTRIBUTE TO WHAT MATTERS MOST TO PATIENTS WITH OROFACIAL CLEFTS.

An orofacial cleft (OC) is a congenital cleft that may affect the lip, alveolus, hard and soft palate. An OC impacts the individuals' appearance, psychosocial well-being and causes functional problems including feeding, dentition, growth of jaws, hearing and speech. The treatment of an orofacial cleft usually reaches from birth until 22 years of age or later. To understand and listen in an objective manner, OC specific Patient reported Outcome (PRO) and experience (PRE) measures are imperative. In patients with OCs many shared decision making moments exist from birth until adulthood. The aim is to understand what knowledge exists on PROs and PREs in patients with OCs, to formulate challenges to improve care to OC patients and how research on OCs needs to adapt. PROs and PREs need to be tailored to the individual with an OC. A framework with specific OC key domains including appearance, facial function and Health related Quality of Life exists. The current framework does not include the social network around the OC patients yet. However attention should be put on including family and community support into the framework. Also at an individual level more attention should be paid to enhancing experiences compared to impeding experiences. To create a better understanding traditional indicators and outcomes are combined with PROMs in a structured way. Challenges were identified that seek to improve our complete set of (PRO and PRE) instruments to provide better care to the individual with an OC and provide a voice so that good shared decision making is enabled. Thereby the individual with an OC is further empowered.

Peer attitudes towards adolescents with speech disorders due to cleft lip and palate.

BACKGROUND AND AIMS: Individuals with speech disorders are often judged more negatively than peers without speech disorders. A limited number of studies examined the attitudes of adolescents toward peers with speech disorders due to a cleft lip with or without a cleft of the palate (CL ± P). Therefore, the aim of the present study was to investigate the attitudes of peers toward the speech of adolescents with CL ± P. METHOD: Seventy-eight typically developing adolescents (15-18 years, 26 boys, 52 girls) judged audio and audiovisual samples of two adolescents with CL ± P based on three attitude components, i.e., cognitive, affective, and behavioral. The degree of speech intelligibility was also scored by their peers. The study investigated whether the three attitudes were determined by speech intelligibility or appearance of an individual with CL ± P. Furthermore, the influence of knowing someone with a cleft, the age, and gender of the listeners on their attitudes were explored. RESULTS: A significantly positive correlation was found between the speech intelligibility percentage and the three different attitude components: more positive attitudes were observed when the speech intelligibility of the speaker was higher. A different appearance due to a cleft lip does not lead to more negative attitudes. Furthermore, boys seem to have more negative attitudes toward individuals with CL ± P compared to girls. CONCLUSION: This study provided additional evidence that peers show more negative attitudes toward adolescents with less intelligible speech due to CL ± P. Intervention should focus on changing the cognitive, affective, and behavioral attitudes of peers in a more positive direction and remove the stigma of patients with a cleft. Further research is needed to verify these results.

Optimizing the Psychosocial Function Measures in the International Consortium for Health Outcomes Measurement Standard Set for Cleft.

BACKGROUND: To ensure the feasibility of implementing PROMs in clinical practice, they must be continually appraised for undue burden placed on patients and clinicians and their usefulness for decision-making. This study assesses correlations between the CLEFT-Q psychosocial scales in the International Consortium for Health Outcomes Measurement Standard Set for cleft and explores their associations with patient characteristics and psychosocial care referral. METHODS: Spearman correlation coefficients were calculated for CLEFT-Q psychological function, social function, school function, face, speech function, and speech-related distress scales. Logistic regressions were used to assess the association of cleft phenotype, syndrome, sex, and adoption status on scale scores and clinical referral to psychosocial care for further evaluation and management. RESULTS: Data were obtained from 3067 patients with cleft lip and/or palate at three centers. Strong correlations were observed between social function and psychological function (r > 0.69) and school function (r > 0.78) scales. Correlation between school function and psychological function scales was lower (r = 0.59 to 0.68). Genetic syndrome (OR, 2.37; 95% CI, 1.04 to 5.41), psychological function (OR, 0.92; 95% CI, 0.88 to 0.97), school function (OR, 0.94; 95% CI, 0.90 to 0.98), and face (OR, 0.96; 95% CI, 0.94 to 0.98) were significant predictors for referral to psychosocial care. CONCLUSIONS: Because social function as measured by the CLEFT-Q showed strong correlations with both school and psychological function, its additional value for measuring psychosocial function within the Standard Set is limited, and it is reasonable to consider removing this scale from the International Consortium for Health Outcomes Measurement Standard Set for cleft.

Thematic Analysis of Coping Strategies Used by Parents of Children with Cleft Lip and Palate in El Salvador.

OBJECTIVE: The aim of this study was to describe coping strategies used by parents of children with cleft palate with or without a cleft (CP ± L) during the early development of their children in El Salvador. DESIGN: Qualitative interviews were completed with 16 parents of children born with CP ± L who were 6 months to 6 years old. Parents were questioned about their emotions and coping during eight time periods: prenatal, birth, social interaction before the first surgery, the beginning of surgeries, social interaction after the first surgery, early childhood education (ECE), speech-language therapy, and formal education. Thematic analysis (TA) was used to identify coping strategies as conceptualized by Lazarus and Folkman (1984). RESULTS: Four major themes emerged: (a) experienced emotions related to diagnosis, (b) interpretations related to the birth of a child with a cleft, (c) seeking and experiencing cleft treatment, and (d) social interaction of the children. During prenatal and birth stages, parents used emotion-focused strategies. A few hours to a week after birth, they used problem-focused strategies, which led them in search of treatment. Some parents used avoidance strategies during periods of social interaction before surgery, ECE, and formal education. Socioeconomic challenges impacted access to speech-language therapy. Sociocultural factors, such as discrimination, religion, and folk beliefs, appeared to influence some of the coping strategies used by parents. CONCLUSIONS: Problem-focused strategies appear to be helpful in seeking surgical treatments. The emotion-focused strategy of avoidance seemed to have adverse effects in minimizing opportunities for social interaction prior to surgery and early education.