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.     

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.     

Long-term evidence for favorable midfacial growth after delayed hard palate repair in UCLP patients.

OBJECTIVE: To investigate whether delayed hard palate repair resulted in better midfacial growth in the long term than previously achieved with "conventional" surgical methods of palatal closure. DESIGN AND SETTING: Long-term cephalometric data from patients with unilateral cleft lip and palate were available from two Scandinavian cleft centers. The patients had been treated by different regimens, particularly regarding the method and timing of palatal surgery. Patients were analyzed retrospectively, and one investigator digitized all radiographs. PATIENTS: Thirty consecutively treated subjects from each center, with cephalograms taken at three comparable stages between 10 and 16 years of age. RESULTS AND CONCLUSIONS: Patients whose hard palates were repaired late (early soft palate closure followed by delayed hard palate repair at the stage of mixed dentition) had significantly better midfacial development than patients in whom the hard palate was operated on early with a vomer flap, and then during the second year of life, the soft palate was repaired with a push-back procedure. As the growth advantage in the delayed hard palate repair group was accomplished without impeding long-term speech development, the delayed repair regimen proved to be a good alternative in surgical treatment of patients with unilateral cleft lip and palate.     

Evaluation of esthetic, functional, and quality-of-life outcome in adult cleft lip and palate patients.

OBJECTIVE: Evaluation of esthetic, functional, and health-related quality-of-life (HRQoL) outcomes in adult patients with a repaired cleft lip and palate. The treatment for all patients was based on the so-called Vienna concept. PATIENTS/DESIGN: Seventy adult patients with a repaired complete cleft lip and palate, ranging in age from 18 to 30 years, were included in the study. Esthetic and functional outcomes were assessed by the patients themselves and by five experts using a visual analog scale. Patients also completed the MOS Short-Form 36 questionnaire to evaluate health-related quality of life. RESULTS: Patients rated their esthetic outcome significantly worse than the experts did. No significant differences were observed in the ratings for function. Female patients, especially, were dissatisfied with their esthetic outcomes. In a personal interview, nearly 63% of them asked for further treatment, particularly for upper-lip and nose corrections. The health-related quality-of-life questionnaire revealed low scores for only two subscales, namely social functioning and emotional role. In most subscales of health-related quality of life, patients who desired further treatment had significantly lower scores than did patients who desired no further treatment. CONCLUSION: Surgery of the lip and nose appears to be of prime importance for patients with a cleft lip and palate. Cleft patients who do not request secondary treatment are not always satisfied with the treatment. Patients with realistic expectations in regard to further treatment should be treated by specialists, whereas those with unrealistic expectations should be referred to a clinical psychologist.     

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.     

唇裂修复术对唇腭裂患者上颌骨生长发育的影响

目的:探讨唇裂修复术在单侧完全性唇腭裂患者上颌骨生长受限中的作用。方法:52例唇裂修复术后的单侧完全性唇腭裂恒牙列期患者,依是否已行腭裂修复分成两个实验组,通过头颅侧位头影测量片研究两组患者上颌骨生长变化规律,并与正常对照组比较。结果:唇腭裂均修复组与仅唇裂修复组具有基本相似的上颌骨生长抑制。结论:唇裂修复术是影响单侧完全性唇腭裂患者上颌骨生长受抑的重要因素。     

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.     

Comparative study between children with and without cleft lip and cleft palate, part 2: electromyographic analysis.

OBJECTIVE: This study was conducted to compare electromyographic (EMG) activity of superior orbicularis oris muscle between children with repaired cleft lip and cleft palate and children without clefts. METHODS: This study included 28 children with mixed dentition. They were divided into two groups. The study group included 14 children with repaired unilateral cleft lip and cleft palate, ranging in age from 6 to 12 years, who presented clinically with a short upper lip, abnormal lip seal, and inhibition of sagittal development of the midface as assessed radiographically. The control group included 14 children without clefts ranging in age from 8 to 11 years. All had normal lip seal, nasal breathing, and a clinically normal body posture. DESIGN: Bipolar surface electrodes were used for EMG recordings of resting level activity and during swallowing of saliva, speech, and chewing and swallowing of an apple. RESULTS AND CONCLUSIONS: A significantly higher level of activity at rest and during swallowing of saliva was observed in the cleft lip and cleft palate group. Similar activity during speech and chewing and swallowing of an apple was observed in both groups. The higher level of activity at rest and during swallowing of saliva in children with cleft lip and cleft palate seems to suggest that upon higher functional demands their activity increases less than in children without clefts. From a clinical point of view, if increased EMG activity at rest and during swallowing of saliva reflects increased force on the maxilla, then our findings may corroborate Bardach's findings (1990) that surgical treatment of cleft lip has an iatrogenic effect on facial growth, although the lack of significant correlation between the cephalometric data and EMG findings in the present study.     

唇裂修复术对上颌骨生长发育影响的初步探讨

目的：进一步了解唇裂修复手术对唇裂伴牙槽突裂和唇腭裂患者上颌骨生长发育影响方面的差异及其机制,方法：将84例唇裂修复术后患者分为唇裂伴牙槽突裂、唇腭裂唇裂修复组和唇腭裂均修复组,并设健康对照组,摄定位头颅线片并测量分析。结果：唇裂修复术对唇腭裂组上凳骨生长发育的影响明显大于唇裂伴牙槽突裂组,结论：唇腭裂的裂与组织缺损是导致唇裂修复影响上颌骨生长的重要原因。     

Validity of subjective evaluations for the assessment of lip scarring and impairment.

OBJECTIVE: In patients with cleft lip and palate, the aim of the study was (1) to determine and compare the level of agreement among examiners' subjective evaluations of static and dynamic lip form; (2) assess possible bias of examiners' subjective evaluations; and (3) determine the impact of lip scarring on an examiner's subjective assessment of dynamic lip form. SETTING: Patients and subjects were recruited from the University of North Carolina Cleft Lip and Palate Center and School of Dentistry. PATIENTS, PARTICIPANTS: Thirteen patients with unilateral cleft lip and palate and varying degrees of cleft scar severity were selected and one subject without cleft who wore artificial scars of varying severity. INTERVENTIONS: For the patients with cleft, a previously repaired complete cleft lip and palate. Photographs and videotape recordings were made of the patients with cleft and the subject without cleft, with and without the artificial scars, at rest and smiling. MAIN OUTCOME MEASURE(S): Rankings of cleft scar severity and impairment on a 6-point Likert scale by a lay and professional panel. RESULTS: Intra- and interexaminer reliability was good for the lower facial regions at rest but not during movement. Professionals gave ratings of greater severity and impairment than laypersons, and professionals agreed when rating the lower faces at rest more so than during movement. Lip scarring affected perceptions of impairment during movement by viewers in both panels. CONCLUSIONS: Subjective assessments can be affected by methodological approaches, professional experience, and stimulus type. Future research should focus on establishing objective methods to evaluate patients with cleft lip and palate at rest and during function.     

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.     

单侧完全性唇（腭）裂患者术后上唇特征的研究

目了：了解单侧完全性唇（腭）裂患者术后上唇的形态特征。方法：将单侧完全性唇裂组和唇腭裂组患者。以及正常对照组的正,侧位标准相片上的上唇白唇面积,上唇白唇高,上唇红唇高,口裂宽,以及鼻底凸度,上唇和下唇凸度进行测量分析。结果 单侧完全性唇裂和唇腭裂患者唇裂术后的上唇面积和上白同均明显,于正常对照组,唇裂患者的唇突指数,明显小于正常对照组和唇裂组。结论 单侧完全性唇（腭）裂患者术后唇高短于正常对照组,唇突指数可较好地反映唇（腭）＿裂患者上唇支持硬组织凹陷畸形的程度。     

Quality of life in adults with repaired complete cleft lip and palate.

OBJECTIVE: This study evaluated the quality of life in adult Swedish subjects with repaired complete cleft lip and palate (CLP). DESIGN/PATIENTS: Sixty-eight adults with repaired CLP were compared with a group of 66 adults without cleft matched by gender and age. OUTCOME MEASURES: The outcome measures included a self-report questionnaire concerning quality of life in general, well-being, and health-related quality of life. RESULTS: The CLP group rated their quality of life significantly lower than did the control group in the areas of life meaning (p <.05), family life (p <.0001), and private economy (p <.01). There were no significant differences between the groups concerning well-being. In the CLP group, the health-related quality of life was significantly lower concerning global life (p <.0001), disturbance to life (p <.01), well-being (p <.0001), social contacts (p <.0001), and family life (p <.05) but significantly higher concerning ability to make the most of leisure time (p <.001) and to be active (p <.001). CONCLUSIONS: The CLP group perceived a marked impact of the handicap on their lives concerning global aspects, well-being, and social life. More practical and tangible aspects of their daily living, however, were not affected, and only some minor aspects of their quality of life in general were poor in comparison with the control group, which indicates a fairly good life adjustment in spite of the handicap.     

Early assessment of dental arch development in repaired unilateral cleft lip and unilateral cleft lip and palate versus controls.

OBJECTIVE: To evaluate dental arch relationships and dimensions, relative to an age matched noncleft sample, in Caucasian 3-year-old children with repaired unilateral cleft lip (UCL) or unilateral cleft lip and palate (UCLP). DESIGN: Prospective, cross-sectional, case-control study performed in Scotland, U.K. PARTICIPANTS: Eleven children with repaired unilateral cleft lip, 16 children with repaired unilateral cleft lip and palate, and 78 children as controls. MAIN OUTCOME MEASURES: Dental arch relationships and linear arch dimensions. RESULTS: Prevalence of Class III incisor relationship was 31.3% in children with unilateral cleft lip and palate compared with 9.1% in children with unilateral cleft lip. A buccal crossbite was present in 36% of children with unilateral cleft lip, compared with 75.6% of children with unilateral cleft lip and palate.Mean linear maxillary arch dimensions did not differ significantly between children with unilateral cleft lip and the controls. Except for second intermolar width, statistically significant differences existed in mean linear maxillary arch dimensions between the unilateral cleft lip and the unilateral cleft lip and palate groups; the mean linear maxillary arch dimensions were significantly greater in the control group than in the unilateral cleft lip and palate group. The mean cleft-affected anterior quadrant length appeared to be the arch dimension with the greatest power of discrimination among the three groups. There were no significant differences in mean linear mandibular arch dimensions among the three groups. CONCLUSIONS: Anterior crossbite was almost three times more common in the unilateral cleft lip and palate group than in the unilateral cleft lip group. Mean linear maxillary arch dimensions differed significantly between the unilateral cleft lip and palate group and the control group. There were no significant differences in mean linear maxillary arch dimensions between unilateral cleft lip and controls or between mean linear mandibular arch dimensions for unilateral cleft lip, unilateral cleft lip and palate, and controls.     

Mandibular morphology and spatial position in patients with clefts: intrinsic or iatrogenic?

Lateral cephalometric films of operated (Op) and non-operated (Nop) patients with cleft lip and alveolus, cleft lip and palate or cleft palate only, were compared to determine whether the shape or position of the mandible is affected by lip and/or palate surgery. The sample included 204 adult cleft patients, Caucasians of both sexes with one of the following three cleft types: complete unilateral lip and alveolus (n = 50), complete unilateral lip and palate (n = 68), and isolated palate (n = 86). The comparison involved 113 cleft patients operated at the conventional timing and 91 cleft patients who had received no surgical or orthodontic treatment. Comparison was done in order to ascertain if the surgery performed had had any influence upon mandibular growth. The results indicated that, in all three cleft types, the surgery did not induce significant changes in the mandibular growth.     

Repair of bilateral cleft lip: review, revisions, and reflections

Rarely does the appearance of a child with a repaired bilateral cleft lip compare favorably with that of a child with a repaired unilateral cleft lip. However, there has been a major change in operative strategy during the past decade, and as a result, the typical bilateral cleft nasolabial stigmata are no longer so obvious. The senior author restates the principles for correction of bilateral cleft lip and nasal deformity, and underscores the essential role of preoperative premaxillary positioning. He reviews his method of single-stage closure of the cleft primary palate, including three-dimensional adjustments based on predicted four-dimensional changes. Operative modifications are described for variations of bilateral cleft lip. The authors emphasize the surgeon's obligation for periodic assessment. In a consecutive series of 50 patients with repaired bilateral complete cleft lip/palate, the revision-rate was 33% as compared with 12.5% if the secondary palate is intact. No revisions were necessary for philtral size or columellar length. The authors propose that nasolabial appearance and speech are the priorities in habilitation of the child with bilateral cleft lip/palate rather than the traditional emphasis on maxillary growth.     

Recovering the personal identity of an elderly patient with cleft lip: a case report

Instances of unoperated cleft lip and/or palate (CLP) in adult or elderly patients are still seen in developing countries. This paper presents the multidisciplinary management and the personal identity revival of a 72‐year‐old patient with unoperated unilateral complete cleft lip. The facial deformity was characterized by a protrusion of the excess of orbicularis oris muscle, irregularities of the upper lip, nose distortion, and septum deviation to the cleft side. The patient was edentulous with the maxillary alveolar ridge collapsed and an associated fistula. The cleft lip was repaired using the Tennison–Randall technique and complete dentures were delivered after the oroantral fistula had been closed. The patient was very pleased with the improvement in speech and eating and she approved of her facial esthetics. The existence of unoperated oral clefts in the elderly population highlights the need to improve policies in treating patients with CLP, mainly in developing countries.     

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.     

Association between subjective and objective measures of lip form and function: an exploratory analysis.

OBJECTIVE: In patients with cleft lip and palate, the aims of this study were to generate objective measures of different attributes of lip movement and to explore the utility of these objective measures by examining the association between examiners' subjective assessments with the objective measures. PATIENTS AND PARTICIPANTS: Thirteen patients with unilateral cleft lip and palate with varying degrees of cleft scar severity were selected. All patients had a previously repaired complete unilateral cleft lip and palate. INTERVENTIONS: Photographs and videotape recordings were made of the patients with cleft at rest and during smiling. Measurements of lip movement were obtained by means of a motion analysis system. MAIN OUTCOME MEASURES: The study sought to obtain rankings of cleft scar severity and impairment on a 6-point Likert scale by a lay and professional panel and measurements of displacement, asymmetry, speed, and velocity of upper lip during smiling. RESULTS: Displacement was the most consistent and valid objective measurement. An objective analysis of the entire upper lip provided the most information. In general, there was a decrease in the objective measures of upper lip movement as examiners' perceptions of facial appearance or disfigurement at rest and impairment during movement became worse. This relationship was stronger for the at-rest perceptions, implying that subjective assessments should be made with the face at rest. CONCLUSIONS: Objective measures provided the promise for differentiation of the components of movement and should be used to supplement subjective evaluations of lip appearance at rest and during movement.     

Audiologic and tympanometric findings in children with cleft lip and palate.

OBJECTIVE: To evaluate the otologic and audiologic status of 50 children with repaired cleft lip, cleft palate, or both in Hacettepe University, Ankara, Turkey. DESIGN: Audiometric and tympanometric evaluation of 100 ears in 50 children were performed. Hearing levels < or = 15 dB and middle ear pressures between -50 to +50 decaPascals were considered to be normal. Results were examined according to cleft type and laterality. The least and most affected frequencies were calculated. A simple evaluation of speech characteristics including nasal resonance, nasal air escape, and errors of articulation was also performed. RESULTS: Sixty-three of the 100 ears had normal hearing status, whereas 40 had normal middle ear pressures. No evidence was found to suggest that individual cleft type and laterality of the ear had any effect on hearing loss or middle ear disease. Two-thirds of the patients had normal or acceptable degree of language skills. CONCLUSION: The final hearing status of patients with cleft palate is a result of a combination of surgical correction, developmental factors, and treatment of middle ear disease. Early and aggressive ventilation tube placement is the standard of cleft care in many countries. Our long-term hearing outcome is relatively good in a population not treated with routine insertion of ventilation tubes. The majority of patients also have satisfactory speech. Patients with cleft palate should have close follow-up for middle ear disease, but further research is warranted to determine the aggressive usage of ventilation tubes.