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.     

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.     

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.     

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.     

Parent and child ratings of satisfaction with speech and facial appearance in Flemish pre-pubescent boys and girls with unilateral cleft lip and palate

The purpose of this controlled study is to determine satisfaction with speech and facial appearance in Flemish pre-pubescent children with unilateral cleft lip and palate. Forty-three subjects with unilateral cleft lip and palate and 43 age and gender matched controls participated in this study. The Cleft Evaluation Profile was used to assess the perceived satisfaction for individual features related to cleft care. Both the cleft palate subjects and their parents were satisfied with the speech and facial appearance. The Pearson χ(2) test revealed significant difference between the cleft palate and the control group regarding hearing, nasal aesthetics and function, and the appearance of the lip. An in depth analysis of well specified speech characteristics revealed that children with clefts and their parents significantly more often reported the presence of an articulation, voice and resonance disorder and experienced /s/ /r/ /t/ and /d/ as the most difficult consonants. To what extent the incorporation of specific motor oriented oral speech techniques regarding the realisation of specific consonants, attention to vocal and ear care, and the recommendation of secondary velopharyngeal surgery, with the incorporation of primary correction of the cleft nose deformity simultaneously with primary lip closure, will aid these patients are future research subjects.     

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.     

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.     

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.     

Vestibuloplasty in patients with cleft lip and palate

After cleft lip repair the upper lip is sometimes attached at the premaxilla. The scar bands and contractures may occur deleterious effects on: the growth, the facial expression, the speech, problems during orthodontic treatment and in prosthetic dental care, regression of the attached gingiva, resorption of the transplanted bone and the aspect of the upper lip. In nine edentulous patients with cleft lip palate, in six patients with cleft lip palate and with a mutilated dentition and in ten younger patients with cleft lip palate the buccal sulcus was successfully restored. The importance of a free upper lip and adequate sulcus has been under-emphasized in treatment of the patient with cleft lip palate.     

Visual and statistical modeling of facial movement in patients with cleft lip and palate.

OBJECTIVE: To analyze and display facial movement data from noncleft subjects and from patients with cleft lip and palate by using a new dynamic approach. The hypothesis was that there are differences in facial movement between the patients with cleft lip and palate and the noncleft subjects. SETTING: Subjects were recruited from the University of North Carolina School of Dentistry Orthodontic and Craniofacial Clinics. PATIENTS, PARTICIPANTS: Sixteen patients with cleft lip and palate and eight noncleft "control" subjects. INTERVENTIONS: Video recordings and measurements in three dimensions of facial movement. MAIN OUTCOME MEASURES: Principal component (PC) scores for each of six animations or movements and dynamic modeling of mean animations. STATISTICS: Multivariate statistics were used to test for significant differences in the PC mean scores between the patient groups and the noncleft groups. RESULTS: No statistically significant differences were found in PC mean scores between the patient groups and the noncleft groups; however, the variability of the effect of clefting on the soft tissues during animation was noted when the noncleft data were used to establish a "normal" scale of movement. Compensatory movements were seen in some of the patients with cleft lip and palate, and the compensation was not unidirectional. CONCLUSION: Measures of mean movement differences as summarized by PC scores between patients with cleft lip and palate and noncleft subjects may be misleading because of extreme variations about the mean in the patient group that may neutralize group differences. It may be more appropriate to compare patients to a noncleft normal scale of movement.     

The Sri Lankan Cleft Lip and Palate Project: the unoperated cleft lip and palate

Since 1984, the Sri Lankan Cleft Lip and Palate Project has developed a large surgical and research program collecting records on over 500 subjects with unrepaired cleft lip and palate. In addition, 410 operations were performed by Project and will be followed by individual reports on facial growth and morphology, speech, surgical and anesthetic aspects, and the otologic significance of cleft palate in this issue and subsequent ones.     

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.     

Patient satisfaction related to rigid external distraction osteogenesis

The aim of this study was to evaluate satisfaction with treatment among cleft lip and palate patients who underwent maxillary advancement using a rigid external distraction (RED) device. Nine patients (four boys, five girls), mean age 17.7 years (SD 4.0), were included in the study. Outcome measures included satisfaction with facial appearance and function (sensitivity/pain, discomfort during daily functioning, daily activities, speech, eating and/or drinking, expression of affection) before, during and after treatment with the RED device assessed by a self-administered questionnaire. Before treatment, the majority of patients were not satisfied with their facial appearance. Some received negative remarks about their appearance and experienced minor functional problems. Dissatisfaction with appearance, negative remarks and functional problems increased significantly during active treatment, and the majority of patients experienced pain or sensitivity. After treatment all patients but one were satisfied with their appearance and level of function. Overall patient satisfaction after treatment with a RED device is high, but the active treatment period, during which the frame is worn, significantly compromises function and may be painful. For most patients, satisfaction with the final result and appearance outweighs the negative factors they reported.     

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。     

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.     

Care of adolescents with cleft lip and palate: the role of the general dental practitioner

Management of the adolescent with cleft lip and/or palate is ideally undertaken by a cleft palate team which has overseen care since birth, and which provides, in a paediatric hospital setting, the specialist medical, dental and ancillary care services necessary for optimal management. However, in some countries such a team is not available and individual dental practitioners and dental specialists have to undertake the necessary treatment. This is facilitated in Australia by the Federal Government's 'Cleft Lip and Palate Scheme', which subsidizes all medical and dental treatment related to the congenital defect up to 22 years of age. In such circumstances the general dental practitioner or paedodontist may need to assume an important coordinating role. The timing and integration of phases of general dental, minor oral surgical, orthodontic, periodontic and prosthetic treatment with plastic, ENT and maxillofacial surgery, speech therapy and audiology may become his responsibility. In addition, the provision of a high standard of preventive and general dental care for the cleft patient must be maintained. To carry out this coordinating role effectively, the general dentist must know his patient and family well; must understand the current concepts, objectives, treatment and investigatory techniques used in all aspects of cleft palate management; he should be aware of the genetics of the clefting conditions, medical problems which may commonly be associated with clefts and the cleft as one feature of a syndrome. Most importantly, he should be aware of the special social adjustment problems faced by many cleft adolescents in relation to their perceived 'different' facial appearance and speech.     

Development of the residual cleft in the hard palate after velar repair in a 2-stage palatal repair regimen

Delayed closure of the hard palate is believed to improve maxillary growth and facial appearance in cleft lip and palate patients. However, the cleft opening in the hard palate after velar closure might impair speech development. The aim of this investigation was to study the development of the residual cleft in the hard palate after 2-stage palatal repair (TSPR) in children born with complete cleft lip and palate (bilateral [BCLP]; n=7 or unilateral [UCLP]; n=22) or isolated cleft palate (CP; n=9). Moreover, we aimed to investigate whether any morphologic factors before surgery might predict development of the residual cleft. Dental casts obtained prior to velar repair (mean age 7 months) and postoperatively at 1 1/2, 3, 4, 5 and 7 years were analyzed with a Reflex Microscope regarding the width, length and area of the cleft in the hard palate.The palatal cleft varied in size both pre- and postoperatively in all 3 types of cleft patients. The width of the cleft in the UCLP subgroup showed a marked reduction immediately after velar repair, but then, on average, remained stable until final surgical closure of the hard palate. In the BCLP subgroup the initially rather narrow width of the clefts remained unchanged postoperatively. Clefts in the CP subgroup, especially in those with a complete cleft, remained large after veloplasty. In 4 of the UCLP and 2 of the BCLP patients, the cleft width increased gradually. In some other subjects, both in the UCLP and BCLP subgroups, the residual cleft closed functionally with time, but this development could not be foreseen.     

Facial growth following pharyngeal flap surgery: skeletal assessment on serial lateral cephalometric radiographs

The purpose of this study was to evaluate the effect of pharyngeal flap surgery on subsequent facial growth in patients with cleft lip and/or palate. Pharyngeal flap surgery is used in such patients to partially obliterate the velopharyngeal port, reducing hypernasal speech. Thirty-four patients (18 with cleft palate only, 16 with unilateral cleft lip and palate) were selected from the longitudinal growth study of the H.K. Cooper Clinic. Seventeen of these (9 with cleft palate only, 8 with unilateral cleft lip and palate) underwent pharyngeal flap surgery between the ages of 5 and 7 years. The other seventeen patients did not undergo pharyngeal flap surgery and served as a control group for this study. Serial lateral cephalometric radiographs were traced and digitized (ages 3 to 5, preflap; ages 7-10, postflap). Fourteen skeletodental measurements (six angular, six linear, two derived) were taken to determine whether pharyngeal flap surgery may be related to subsequent facial growth changes. The data from the 17 flap patients were compared with control data taken from the other seventeen patients. The groups were matched for sex, cleft type, and similarity of presurgical mandibular growth direction (facial axis angle). Results obtained demonstrate several significant areas of change following flap surgery, including a decrease in facial axis angle, an increase in Frankfort-mandibular plane angle, an increase in incremental gains in lower anterior face height, and increased retroclination of upper and lower incisors in the flap group as compared to their matched controls.