Habilitation of patients with clefts: parent and child ratings of satisfaction with appearance and speech.

This study examined ratings regarding satisfaction with facial appearance and speech performance from 495 parent-child pairs. Data were obtained from school-aged children (5-18 years old) and their parents using standardized independent interviews. Results revealed that 54 percent of the children with cleft lip (CL) or cleft lip and palate (CLP) were very pleased with their appearance, and 62 percent of the cleft palate or CLP subjects were very pleased with speech. Low, but statistically significant correlations exist between the female subjects and their parents in satisfaction with appearance. Although older cleft lip and/or palate patients reported increased satisfaction with speech, no age differences in patient satisfaction with appearance were observed in subjects with CL/CLP. Parents of females expressed more concern about their daughters' appearance than parents of males, while parents of males were more concerned about speech. Implications for craniofacial habilitation teams and research suggestions are discussed.     

Self-reports of psychosocial functioning among children and young adults with cleft lip and palate.

OBJECTIVE: A cross-sectional study was employed to determine the psychosocial effects of cleft lip and/or palate among children and young adults, compared with a control group of children and young adults without cleft lip and palate. PARTICIPANTS: The study comprised 160 children and young adults with cleft lip and/or palate and 113 children and young adults without cleft lip and/or palate. All participants were between 8 and 21 years of age. OUTCOME MEASURES: Psychological functioning (anxiety, self-esteem, depression, and behavioral problems) was assessed using validated psychological questionnaires. Happiness with facial appearance was rated using a visual analog scale. Social functioning, including experience of teasing/bullying and satisfaction with speech, was assessed using a semistructured interview. RESULTS: Participants with cleft lip and/or palate reported greater behavioral problems (p < .001) and more symptoms of depression (p < .01); they were teased more often (p < .001) and were less happy with their facial appearance (p < .01) and speech (p < .001), compared with controls. There were no significant difference between subjects with cleft lip and/or palate and subjects without cleft lip and/or palate in terms of anxiety (p > .05) or self-esteem (p > .05). Having been teased was a significant predictor of poor psychological functioning, more so than having a cleft lip and/or palate per se (p < .001). CONCLUSIONS: Teasing was greater among participants who had cleft lip and/ or palate and it was a significant predictor of poorer psychosocial functioning. Children and young adults with cleft lip and/or palate require psychological assessment, specifically focusing on their experience of teasing, as part of their routine cleft care.     

Perceptions of appearance and speech by adolescent patients with cleft lip and palate and by their parents

This study surveyed 102 patients with cleft lip, cleft palate, or cleft lip and cleft palate (ages 13 to 19) and their parents to assess satisfaction with appearance, speech ability, and intelligibility. The data were based upon standardized interviews conducted at a cleft palate treatment center, using simple questions with high face validity. Surgical experience was high among this sample, as reflected by the finding that the majority of patients (55.7%) had had three or more operations on the face or mouth. Patient ratings of facial appearance showed that most patients were very pleased (59.3%) or moderately pleased (13.2%); others were somewhat (18.7%) or very (8.8%) disappointed. Many parents indicated that their children expressed occasional (22.0%) or frequent (27.5%) concerns about appearance. Nearly all patients (91.9%) felt that their operations had accomplished what they expected, though some of the cleft lip patients (35.7%) and their parents (43.9%) were less than very pleased with the appearance of the lip. When asked how pleased they were with the way they presently talked, most patients (69.1%) were very pleased, though some disappointment was expressed. Although often pleased with their current speech status, many patients rated themselves as only moderately understandable (19.1%) or as not understandable (8.5%). No significant gender effects were found in satisfaction, appearance, or speech ratings. There were no significant differences found between parent and child ratings. The findings indicate that at a center delivering team-based cleft palate care, both adolescent patients and their parents have considerable concerns about appearance and speech results.     

A questionnaire survey of attitudes and concerns of three professional groups involved in the cleft palate team.

This study investigated the opinions of three of the professional groups who treat cleft lip and palate patients in the United Kingdom. Plastic surgeons, orthodontists, and speech therapists were asked to give their opinions regarding adolescents with a unilateral cleft of the lip and palate. A mail questionnaire investigating four main areas: treatment, facial appearance and speech, social and emotional aspects, and the perceived success of the specialists was sent to each subject. Nearly all the subjects reported that they worked as part of a cleft palate team and there was good agreement among the three groups. Although the professionals felt that they have been successful, they were not satisfied with the results of their treatment nor with the patients' overall facial appearance or speech. They also felt that the patients are emotionally and socially affected by their cleft and are teased. The subjects noted that they think patients feel similarly to themselves on all aspects. The significance of the results is discussed.     

Questionnaire survey of attitudes and concerns of patients with cleft lip and palate and their parents

The self-perceived problems and concerns of patients with complete unilateral cleft lip and palate and their parents were investigated. Thirty-two patients ranging in age from 16 to 25 years (mean = 19.9 years) and their parents were sent questionnaires by mail. Twenty-eight patients and 30 parents completed the questionnaires. The results suggest that the patients were satisfied with the treatment they had received. They believed that the efforts of the members of the cleft palate team had been successful, and they were generally satisfied with their overall facial appearance and speech. There were, however, specific aspects with which they were less satisfied; their nose, lip, profile, speech, and teeth. They did not feel significantly socially or emotionally handicapped, although they noted that they had been teased and that they found relations with the opposite sex difficult. Their parents were also generally satisfied with all aspects of treatment and their child's appearance and speech. They identified those areas that their child was most concerned with, but did not fully appreciate how satisfied their child was with his or her facial features. The parents felt that their children were socially and emotionally affected by their cleft and felt their school results had also been affected.     

Audit of a multidisciplinary approach to the care of children with unilateral and bilateral cleft lip and palate

Cleft lip and palate affects the child in many ways, particularly appearance, dental arch relationships, growth of the face, and speech development. The key to successful care is management in a multidisciplinary team adhering to a well-designed protocol, and careful audit of results. We present the intermediate outcome audit of 15 patients with complete bilateral and unilateral cleft lip and palate whose condition was managed in a multidisciplinary team according to a strict protocol. We give the results observations of operations of a single surgeon's functional primary surgery over a 6-year period in terms of dental arch relationships, cephalometric analyses, aesthetic assessments, and speech analysis. The results show good early facial growth, with dental arch relationships appropriate for the age and group; we found only minor speech discrepancies, with no patients requiring pharyngoplasty. The results show the importance of multidisciplinary management, the value of keeping to sound surgical protocols, and functional techniques in cleft lip and palate surgery. Our study includes the neglected group of children who have bilateral cleft lip and palate, and it conforms to the style of pan-European projects.     

唇腭裂患儿的心理社会因素的分析研究（Ⅲ）

本文通过对113例唇腭裂患儿的自我评估以及患儿的父母对其术后容貌与语音效果的评估.发现容貌与语音相比,多数唇腭裂患儿(66.04%)和父母(66.04%)认为语音清晰比容貌更重要,语音不清是患者目前存在的主要问题.几乎一半的患儿(49.02%)想首先改变发音不清的现状,而首先想改变容貌的则占(35.4%).由于面部畸形和语音障碍的存在,对患儿的个性心理正常发展以及对学习,社交的影响,加之这种先天畸形使患儿受到许多来自客观的歧视,导致了患儿的心理和情绪的压抑.本文分析了有语音障碍和面部畸形患儿的社会心理影响因素,试图为唇腭裂患儿的综合治疗从理论和方法上提出一些生理心理治疗建议.     

Different cleft conditions, facial appearance, and speech: relationship to psychological variables.

OBJECTIVE: The purpose of this investigation was to study the adjustment and learning characteristics of children with different types of clefts. The hypotheses were that there may be different relationships among cleft variables (speech and appearance) according to the cleft types. DESIGN: The study compared three cleft groups on behavior rating, anxiety scales, depression scales, and self-perception (analyses of variance) and examined the influence of facial and speech ratings on self-perception (multiple regression analyses). SETTING: All patients were treated at a university hospital cleft palate clinic. PATIENTS: Sixty-five children aged 8 years to 17 years were selected based on nonsyndromic cleft (unilateral cleft lip and palate [ULP], bilateral cleft lip and palate [BLP], and cleft palate only [CPO]) and no significant neurological condition or hearing loss. RESULTS: The findings indicated children with CPO showed greater problems with parent- and teacher-reported depression, anxiety, and learning related to speech than children with ULP or BLP. The later two groups showed fewer problems and a greater relationship of problem to facial appearance. The children with ULP self-reported lower levels of depression than the other two groups. CONCLUSIONS: Children with cleft show relatively good overall adjustment, but some problems appear related to speech and facial appearance. Subgroups may need to be studied separately.     

Cleft lip and palate care in the United Kingdom--the Clinical Standards Advisory Group (CSAG) Study. Part 2: dentofacial outcomes and patient satisfaction.

OBJECTIVE: To describe facial development and appearance, quality of bone grafts, oral health, and patient/parent satisfaction, with clinical outcome, for children in two age cohorts born with unilateral cleft lip and palate (UCLP) throughout the United Kingdom. DESIGN: Cross-sectional outcome study. SETTING: Fifty National Health Service cleft centers. PARTICIPANTS: Children born with complete UCLP between April 1, 1982, and March 31, 1984, (12-year-olds) and April 1, 1989, and March 31, 1991 (5-year-olds). Data were collected for 239 5-year-olds and 218 12-year-olds. The parents of these children were also interviewed to determine levels of satisfaction with care received. MAIN OUTCOME MEASURES: Skeletal pattern, dental arch relationship, success of alveolar bone grafting, facial appearance, oral health status, and patient/parent satisfaction. RESULTS: Nearly 40% of 5- and 12-year-olds had poor dental arch relations, and 70% of 12-year-olds had midface retrusion. Fifteen percent of 12-year-olds had not received an alveolar bone graft, and only 58% of bone grafts that had been undertaken were successful. Twenty percent of 12-year-olds and 40% of 5-year-olds had untreated dental caries. Less than one-third of subjects had a good facial appearance as judged by a panel of experts. Levels of patient and parent satisfaction were generally high. CONCLUSION: A rigorous evaluation of cleft care in the United Kingdom reveals disappointing outcomes.     

唇腭裂患儿家长的心理分析

的　评价唇腭裂患儿家长心理状态,探讨唇腭裂患儿家长负性心理状态与唇腭裂类型的关系,及改善 唇腭裂患儿家长负性心理的有效途径。方法　筛选非综合征性唇腭裂患儿家长100名作为试验组,另选择34名正 常儿童家长作为对照组。试验组按照患儿唇腭裂类型分为3个亚组:单纯性唇裂组(CL组)、单纯性腭裂组(CP组) 和唇腭裂组(CLP组)。选用生活事件量表和焦虑自评量表对试验组和对照组家长的心理状态进行定性和定量分 析。结果　试验组生活事件总刺激量、负性事件刺激量均高于对照组(P<0·05),3个亚组间生活事件总刺激量和 负性事件刺激量也有统计学差异(P<0·05),CLP组最高,CP组最低。焦虑自评量表调查结果显示,试验组焦虑自 评总分值与对照组无统计学差异(P>0·05)。结论　唇腭裂患儿家长普遍处于一种负性心理状态,少数表现出躯 体症状,唇腭裂患儿的畸形类型不同,家长的负性心理状态也不同,唇裂畸形比腭裂畸形对家长心理的影响更重, 说明唇腭裂患儿家长更在乎患儿的容貌畸形。     

Assessment of patients' level of satisfaction with cleft treatment using the Cleft Evaluation Profile.

OBJECTIVES: Determination of the psychosocial status and assessment of the level of satisfaction in Malaysian cleft palate patients and their parents. DESIGN: Cross-sectional study. PARTICIPANTS AND METHODS: Sixty cleft lip and palate patients (12 to 17 years of age) from Hospital Universiti Sains Malaysia and their parents were selected. The questionnaires used were the Child Interview Schedule, the Parents Interview Schedule, and the Cleft Evaluation Profile (CEP), administered via individual interviews. RESULTS: Patients were teased because of their clefts and felt their self-confidence was affected by the cleft condition. They were frequently teased about cleft-related features such as speech, teeth, and lip appearance. Parents also reported that their children were being teased because of their clefts and that their children's self-confidence was affected by the clefts. Both showed a significant level of satisfaction with the treatment provided by the cleft team. There was no significant difference between the responses of the patients and their parents. The features that were found to be most important for the patients and their parents, in decreasing order of priority, were teeth, nose, lips, and speech. CONCLUSIONS: Cleft lip and/or palate patients were teased because of their clefts, and it affected their self-confidence. The Cleft Evaluation Profile is a reliable and useful tool to assess patients' level of satisfaction with treatment received for cleft lip and/or palate and can identify the types of cleft-related features that are most important for the patients.     

A preliminary study of nasal airway patency and its potential effect on speech performance.

The relationship between nasal airway size and articulatory performance was studied in a group of cleft palate patients. Articulation analysis revealed that children with bilateral cleft lip and palate were nearly twice as likely to manifest compensatory articulations as children with unilateral cleft lip and palate or with cleft palate only. When subjects were grouped according to speech performance, aerodynamic assessment indicated that children with compensatory articulations had significantly larger nasal cross-sectional areas than children without compensatory articulations. The findings suggest that children with comparatively large nasal airways may be at increased risk for developing abnormal speech patterns. If these findings are confirmed by further research, such children may be candidates for relatively early palate repair.     

Satisfaction with treatment outcome in bilateral cleft lip and palate patients

The aim of this case-controlled study was to assess satisfaction with facial appearance and function, and health-related quality of life (HRQL) in bilateral cleft lip and palate patients (BCLP). The study sample was composed of adult BCLP subjects and controls matched for age, gender and socioeconomic status. Outcome measures included a self-administered questionnaire evaluating satisfaction with facial appearance, function and HRQL. Bivariate statistics were computed to analyse the association between BCLP status and outcome measures. Forty-three treated adult BCLP patients (mean age 28.2 years, SD 7.8) were compared to 43 controls without clefts (mean age 28.5 years, SD 8.0). Quantitative and qualitative assessment revealed that BCLP patients were significantly less satisfied with the appearance of the upper lip, the nose and nasal breathing. Additionally, satisfaction with facial appearance correlated positively with HRQL. For speech, hearing and drinking, quantitative scores did not differ between BCLP and controls, while qualitative assessment revealed that BCLP patients had considerable problems and concerns with these functions. This study underlines the importance of qualitative assessment of patient satisfaction with treatment outcome to identify individual problems and concerns not revealed by quantitative measures alone.     

Results of randomized controlled trial of soft palate first versus hard palate first repair in unilateral complete cleft lip and palate.

OBJECTIVE: To compare the outcomes for primary repair of unilateral cleft lip and palate, operating on the soft palate first versus the hard palate first. DESIGN: Randomized controlled trial. SETTING: The Regional Cleft Service of West Nepal. PATIENTS: Forty-seven consecutive patients with nonsyndromic unilateral cleft lip and palate, of whom 37 were assessed 4 to 6 years after completing primary surgical repair. INTERVENTIONS: Primary repair of unilateral cleft lip and palate by two differing sequences: (1) soft palate repair, with hard palate and lip repair 3 months later; and (2) lip and hard palate repair, followed by the soft palate repair 3 months later. MAIN OUTCOME MEASURES: Analysis of dental study models, weight gain, and speech recordings. RESULTS: Four to 7 years after completing the cleft closure, there was no significant difference in facial growth between the two types of repair sequencing. Completing posterior repair first had no effect on anterior alveolar gap width. It narrowed the hard palate gap by reducing the intercanine distance. Anterior repair dramatically closed the anterior alveolar gap, and narrowed the intercanine distance. Comparing anterior alveolar gap width with age at first presentation demonstrated that there was no spontaneous narrowing of the cleft in older children. Completing posterior closure first had a weight gain advantage over anterior closure first. Improved oropharyngeal closure, and thus swallowing, is the likely explanation. CONCLUSION: Changing the sequencing of cleft closure has no demonstrable difference in facial growth at 4 to 7 years after completion of the primary surgery.     

Nasalance measures in Marathi consonant-vowel-consonant syllables with pressure consonants produced by children with and without cleft lip and palate.

OBJECTIVE: The purpose of this study was to ascertain whether there exist differential nasalance measures for consonant-vowel-consonant syllables consisting of different pressure consonants articulated by Marathi-speaking children with and without repaired cleft lip and palate. PARTICIPANTS: Ten Marathi-speaking children with repaired cleft palate between the ages of 5 and 12 years formed the experimental group. The control group consisted of 10 age- and sex-matched children with no clefts and no history of any hearing, speech, or voice disorder. METHODS AND MATERIALS: The Kay Elemetrics nasometer model 6200-2 (IBM-PC version) was used for obtaining nasalance measurements. Speech material consisted of eight Marathi monosyllabic words consisting of the pressure consonants in the initial position. The correlation between perceptual judgments of nasality and the instrumental measures was studied by computing the Phi coefficient. RESULTS: Results indicate that there exist differential mean nasalance scores for the syllables with different pressure consonants articulated by Marathi-speaking subjects with repaired cleft lip and palate and those without cleft lip and palate. Correlation coefficient computed between the instrumental measures and the perceptual judgments of nasality indicates moderate correlation between the two measures. CONCLUSIONS: Presence of differential nasalance scores may have diagnostic and therapeutic implications. Results also emphasize the need to evaluate nasal resonance in stimuli other than the traditional ones.     

Associations between dental occlusion and misarticulations of Finnish dental consonants in cleft lip/palate children

The purpose of this study was to examine whether malocclusions in terms of crossbites, large maxillary overjet, and deep bite are related to the articulatory problems with the Finnish dental consonants /r/, /s/ and /l/ in different cleft types and gender. The subjects were 260 (108 girls, 152 boys) 6-yr-old Finnish-speaking non-syndromic children with isolated cleft palate (CP, n = 79), cleft lip/alveolus (CL(A), n = 76), unilateral (UCLP, n = 78), and bilateral (BCLP, n = 27) cleft lip and palate. Occlusal anomalies were evaluated from dental plaster casts, and speech was analyzed by two speech pathologists with a high reliability. Altogether, 43% of patients misarticulated at least one of the studied sounds, and had crossbites significantly more often (73%) than subjects with correct /r/, /s/ and /l/ production (45%). Posterior crossbites were significantly associated with defective articulation, whereas anterior crossbite alone, large maxillary overjet, or deep bite were not. It was concluded that occlusal abnormalities in terms of posterior crossbites should be considered as a risk factor for correct dental consonant articulation in cleft-affected subjects.     

单侧唇裂患者二期整复需求规律的初步研究

目的 了解单侧唇裂患者对二期整复的需求特点,掌握单侧唇裂患者二期整复的需求规律。方法 采用普查法对河南省部分地区的人群进行调查,对唇裂一期术后患者进行术区照相,随机抽取100例单侧唇裂患者,由专业组（唇腭裂专科医生组）、非专业组（医院行政人员组）、患者家属组分别对患者的面部外形进行满意度评价,对各组主观评价满意度一致的患者照片进行面部对称率测量。结果 面部对称率与主观评价无趋同性;专业组和非专业组对患者面部外形的不满意率较患者家属组更高（P<0.05）。结论 测量器官非对称率不是评价单侧唇裂二期整复需求最适宜的方法;专业组和非专业组的不满意率均高于患者家属的不满意率。     

Quality of life and family functioning in children with nonsyndromic orofacial clefts at preschool ages

Children with orofacial clefts (OFC) at preschool ages may have to tolerate psychosocial disadvantages due to their altered speech and facial appearance probably affecting their quality of life (QoL) and family functioning. In 147 children with OFC aged between 5 and 6 years and their families, the QoL and family functioning were analyzed using the KINDL questionnaire for measuring health-related QoL in children and impact on family scale. The KINDL scores were lowest in the dimension self-esteem. In all dimensions, the KINDL scores of children were higher than those of the parents suggesting a superior QoL than the caregivers estimated (P<0.001). In affected families, the impact on family scale dimensions personal impact and impact on coping strategies were found highest. Families having children with isolated cleft lip or cleft lip and palate had higher impacts on coping strategies when compared with children having isolated cleft palate (P<0.041). The impact for siblings (P<0.02) was found highest in patients with cleft lip and palate. In all examined dimensions, children with OFC perceived a higher QoL than their caregivers expected. However, self-esteem seems to be problematic in all types of OFC and in both genders. Knowledge of potential impacts related to the type of cleft and the gender of the patient will probably facilitate health care professionals to identify children and families at high risk to experience a reduced QoL and may help to offer specific support and treatment strategies.     

Outcomes of cleft care in Western Australia: a pilot study

The purpose of this study was to compare outcomes and delivery of cleft care in Western Australia with the average standard of care in the United Kingdom (UK). This was achieved through a cross-sectional study involving children born with unilateral cleft lip and palate between April 1983 and March 1985 (12 year olds) or between April 1990 and March 1992 (5 year olds). A total of 38 children born with unilateral cleft lip and palate were under the care of the cleft team based at Perth's Princess Margaret Hospital. Dental arch relations, facial skeletal pattern, speech, hearing, success of alveolar bone grafting and dental health were measured. It was found that fewer Princess Margaret Hospital children in both age cohorts had revision surgery and speech therapy compared with the UK average. The facial skeletal pattern, speech, hearing and alveolar bone grafting outcomes from Princess Margaret Hospital were similar to the UK at age 12. Seventeen per cent of the Princess Margaret Hospital 12 year olds had a poor dental arch relationship compared with 39 per cent in the UK. In the 5 year olds, most outcomes in Princess Margaret Hospital patients appeared better than the UK with lower residual treatment needs. While it is difficult to draw firm conclusions because of the small numbers involved, this study indicates standards need to be set and determined for Australia.     

A cross-sectional study of speech in 10-year-old children with cleft palate: results and issues of rater reliability.

OBJECTIVES: To describe speech based on perceptual evaluation in a group of 10-year-old children with cleft palate. A secondary aim was to investigate the reliability of speech-language pathologists' perceptual assessment of cleft palate speech. DESIGN: Retrospective cross-sectional study in children with cleft palate. External raters made assessments from randomized speech recordings. SUBJECTS: Thirty-eight children with unilateral cleft lip and palate (UCLP) or cleft palate only (CPO) and 10 children in a comparison group. MAIN OUTCOME MEASURES: Ratings of hypernasality, hyponasality, audible nasal air leakage, weak pressure consonants, and articulation. Exact agreement and weighted kappa values were used for reliability. RESULTS: Hypernasality was found in 25% of children with a cleft of the soft palate (CSP), 33% of children with a cleft of the hard and soft palate (CHSP), and 67% of children with a UCLP. Similar results were found for audible nasal air leakage. Articulation errors were found in 6% of the CHSP group and 25% of the UCLP group, whereas no child in the CSP group had articulation errors. The reliability was moderate to good for different variables, with lowest values for hypernasality. CONCLUSIONS: Speech results in this series seem less satisfactory than those reported in other published international studies, but it is difficult to draw any certain conclusions about speech results because of large methodological differences. Further developments to ensure high reliability of perceptual ratings of speech are called for.