Assessment of Patients Level of Satisfaction With Cleft Treatment Using the Cleft Evaluation Prole

Siti Noor Fazliah Mohd Noor, B.D.S., M.Clin.Dent., Sabri Musa, B.D.S., M.Sc.

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 Prole (CEP), administered via individual interviews. Results: Patients were teased because of their clefts and felt their self-condence 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 childrens self-condence was affected by the clefts. Both showed a signicant level of satisfaction with the treatment provided by the cleft team. There was no signicant 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-condence. The Cleft Evaluation Prole 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. KEY WORDS: cleft lip and/or palate, level of satisfaction with cleft treatment, psychosocial aspects

Cleft lip and/or palate is one of the most common congenital craniofacial anomalies, affecting 1 in 711 live births (Bellis and Wolgemuth, 1999). In Malaysia, the occurrence of cleft lip, cleft palate, and a combination of both conditions was reported in 1 out of 941 births (NOHSS, 1998). There were higher occurrences of cleft lip and/or palate in Asians compared with Caucasians. The rate of occurrence of cleft palate across racial groups in the Asian population was reported to be similar (Natsume and Kawai, 1986). Clefting of the secondary palate is most common and affects more males than

Dr. Noor is Lecturer, Pediatric Dentistry Unit, School of Dental Sciences, Universiti Sains Malaysia, Health Campus, Kelantan, Malaysia; Dr. Musa is Lecturer, Department of Children Dentistry and Orthodontics, Faculty of Dentistry, Universiti Malaya, Kuala Lumpur, Malaysia. This study has been supported by a grant from Universiti Sains Malaysia. Portions of the manuscript were presented orally at the Malaysian Psychological Association Conference, Kota Kinabalu Sabah, Malaysia, August 3, 2005. Submitted August 2005; Accepted June 2006. Address correspondence to: Dr. Siti Noor Fazliah Mohd Noor, Pediatric Dentistry Unit, School of Dental Sciences, Universiti Sains Malaysia, Health Campus, 16150 Kubang Kerian, Kelantan, Malaysia. E-mail fazliah@kck.usm.my. 292

females, and clefts occurring on the left side are more common than those occurring on the right side (Gregg et al., 1994). Cleft lip with or without cleft palate was found to be more common in males, and cleft palate only was reported to be more common in females (Natsume et al., 1987, 1988). Psychological and social aspects of cleft lip and/or palate patients have been studied since the 1960s. Earlier studies dealt with perceived cleft palate personality. Cleft lip and/or palate patients were perceived to have lower self-esteem, difculty in the learning process, and a tendency to be more depressed and anxious (Stricker et al., 1979; Ramstad et al., 1995; Broder et al., 1998). They also were thought to have problems in their relationships with family and friends. They were rated as less social and as having difculty meeting new friends because of their deformity (Richman and Harper, 1980; Heller et al., 1981). Based on examinations carried out by mental health professionals, Broder and Strauss (1991) reported that 56% of cleft lip and palate patients, 49% of cleft palate only patients, and 33% of cleft lip patients had problems warranting a psychosocial referral. The sample consisted of patients ages 11 months to 18 years. They reported that the incidence of psy-

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TABLE 1 Sociodemographic Characteristics of the Patients

Characteristics No. of Patients (n) Percentage (%)

TABLE 2 Sociodemographic and Economic Characteristics of the Parents

Number of Parents (n) Percentage (%)

Total Age group (y)

Gender Ethnicity

Type of cleft

Level of education

12 13 14 15 16 17 Boy Girl Malay Chinese Indian Lip Lip and alveolus Lip and palate Palate Submucous Primary school Secondary school

60 6 9 9 14 12 10 25 35 58 1 1 13 2 32 12 1 8 52

100 10.0 15.0 15.0 23.3 20.0 16.7 41.7 58.3 96.7 1.7 1.7 21.7 3.3 53.3 20.0 1.7 13.3 86.7

Characteristics

Primary school Secondary school College/University Gross household in- RM1000* come per month RM10002999 RM30004999 RM50009999 RM10,000 Employment Government servant Private sector Skilled Semiskilled Laborer
* RM Ringgit Malaysia, the Malaysian currency.

Total Level of education

60 21 32 7 43 14 2 1 10 20 2 3 25

100 35.0 53.3 11.7 71.1 23.3 3.3 1.7 16.7 33.3 3.3 5.0 41.7

chosocial problems increased as the patients ages increased. Sixty-two percent of patients between 6 and 12 years of age and 72% of patients between 12 and 18 years of age had psychosocial problems. Psychosocial problems were more frequently found among males (69%) as compared with females (42%). They used behavioral observations, standardized test results, parental and school reports, and interview data to assess these patients psychological status. Psychosocial referrals were made in response to problems or decits in at least one of four main dimensions: cognitive problems, adaptive behavior problems, emotional instability, and family instability. Functional and aesthetic problems frequently arise from clefts of the lip or palate. During infancy, these patients, like those with isolated cleft defects, experience difculties with feeding. Later in life, they will experience some difculties with speech development and hearing loss and may have psychological problems because of the associated poor aesthetics (King et al., 1994). Body image and facial appearance also are related to psychosocial problems, as demonstrated by Bernstein and Kapp (1981). For 2 years, they observed 60 adolescents who had been born with cleft lip and/or palate and found that these children often were ostracized by their peers. Any reference to the cleft in their casual encounters with other people can cause anxiety, anger, shame, and distress. On such occasions, body image, which has been latent and unconscious, abruptly becomes the center of their self-image. As a result, many problems in adjustment to their conditions emerge, particularly during adolescence. Facial aesthetics has universal importance, but it is of particular importance in the eld of dentistry. The face has profound social signicance. Any feature that causes an individual to deviate from the norm can be considered a handicap. The deviation may range from something as straightforward as a dental anomaly to a complex craniofacial deformity. People are judged on the basis of their attractiveness and facial attractiveness in particular. There is considerable evidence to

suggest that those who are attractive have certain advantages over people who are less attractive (Cunningham, 1999). The cosmetic impairment associated with a dentofacial anomaly may represent a twofold disadvantage in its adverse effect on an individuals self-esteem and an unfavorable social response. Reduced self-esteem might result from the response of society in general to the disability and from ones own reaction to the deformity, which usually is related only partially to the realistic impairment presented by the problem (Stricker, 1970). Thus, it is important to explore the importance of facial appearance in cleft lip and palate patients. The objectives of this study were to determine the psychosocial status of cleft lip and palate patients and their parents and to assess the level of satisfaction with cleft treatment among cleft-affected patients and their parents at Hospital Universiti Sains Malaysia (HUSM), Kelantan, Malaysia. At the same time, this study sought to assess the reliability of the Cleft Evaluation Prole (CEP) and the parent-child agreement of satisfaction with the cleft treatment. MATERIALS Participants This study was conducted at the School of Dental Sciences, Universiti Sains Malaysia. A total of 60 cleft lip and/or palate teenagers (Table 1) and their parents (Table 2) were selected. The inclusion criteria for the study were any cleft lip and palate patients 12 to 17 years old who received various treatments at the HUSM and parents of these children. Patients with a craniofacial or other syndrome, patients with hearing or neurological impairment, and patients with mental retardation were excluded from the study. All subjects participating in the study gave their written consent and the study underwent Institutional Review Board approval at HUSM. The subjects psychosocial status and their perceived satisfaction with treatment were assessed using the questionnaires described below and the CEP.
AND

METHODS

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Questionnaires Semistructured Questionnaires The Child Interview Schedule (Turner et al., 1997) and the Parents Interview Schedule (Turner et al., 1997) were administered to the patients and their parents. Before conducting the study, the questionnaires were sent independently to a psychologist and public health ofcer for proofreading. The psychologist and public health ofcer were asked to identify the objective intended for each of the questionnaires. Any parts of the questions that were queried or unclear were modied accordingly. Minor alterations were made to the two questionnaires. On the Child Interview Schedule, Can you remember coming to this clinic? was replaced with Is this your rst visit to this clinic? How do you nd coming to this clinic? was replaced with How do you feel when attending the clinic? On the Parent Interview Schedule, How do you feel when attending the clinic, do you feel at ease or not? was replaced with How do you feel when attending the clinic? The interviewer (S.N.F.) collected data over a period of 6 months. The structure of each questionnaire began with a set of standardized questions about superuous topics designed to put the respondents at ease, such as How long does it take you to travel from home to clinic? These were followed with questions regarding general information, clinic visits, surgical operation, and future treatment. A section dealing with emotional issues such as teasing and self-condence also was included. Questions were constructed using coded forced response questions, which enabled intergroup comparisons to be made. For example, a Yes response to Do you think that having a cleft has affected your self-condence at all? was followed with the selection of one of the following choices: very much affected; quite affected; affected very little; not affected at all. The questions allowed the respondent to justify his or her choice of answer, which enabled a wide range of information to be collected within the course of one interview, depending on the respondents interpretation of the question (Turner et al., 1997). Each interview was carried out independently with each respondent. Condentiality was assured for every subject, and it also was made clear at the start of the interviews that the interviewer was not connected with the subjects cleft care specialists. Cleft Evaluation Prole The CEP originated from the Royal College of Surgeons Cleft Lip and Palate Audit Group (Turner et al., 1997) and was used to assess perceived satisfaction for individual features related to cleft care (Table 3). It consists of an eight-item list: speech, hearing, lip, nose, teeth, bite, breathing, and prole. For each item in the CEP, subjects were asked to rate their satisfaction on a 7-point Likert scale ranging from very satisfactory (a rank of 1) to very unsatisfactory (a rank of 7). Differences between parental and child ratings for four features related to facial appearance (teeth, lip, nose, and prole) were

TABLE 3 Cleft Evaluation Prole

Please Circle the Number That Is Closest to How Things Are for You (Patient) / Your Child (Parent) Now.

Ofce Use

A. Speech Very satisfactory 1 2 3 4 B. Hearing Very satisfactory 1 2 3 4 C. Appearance of the teeth Very satisfactory 1 2 3 4 D. Appearance of the lip Very satisfactory 1 2 3 4 E. Appearance of the nose Very satisfactory 1 2 3 4 F. Breathing through the nose Very satisfactory 1 2 3 4 G. Prole of the face Very satisfactory 1 2 3 4 H. Bite Very satisfactory 1 2 3 4

A. Very unsatisfactory 5 6 7 B. Very unsatisfactory 5 6 7 C. Very unsatisfactory 5 6 7 D. Very unsatisfactory 5 6 7 E. Very unsatisfactory 5 6 7 F. Very unsatisfactory 5 6 7 G. Very unsatisfactory 5 6 7 H. Very unsatisfactory 5 6 7

analyzed. Previous work with the CEP administered via individual interviews among children with cleft lip and palate who were 1, 5, 10, 15, and 20 years of age and their parents showed that two features (teeth and lip) showed statistically signicant differences between the parents and 15-year-old subjects (Turner et al., 1997). This study used the kappa statistic to assess the lack of agreement between parents and their children for perceived cleft care outcome. Using weighted kappa statistics is limited to investigation of frequency of agreement between groups and will not indicate how these groups differ or whether the difference is signicant (Turner et al., 1997). All items in the CEP are related to facial features that play a major role in assessing facial appearance among cleft lip and palate patients and can be used to determine the perceived satisfaction of the patients and their parents with the clinical outcome of cleft treatment. The CEP can be employed to determine any signicant differences in the parent and child ratings of the features that were related to facial appearance, namely teeth, lips, nose, and facial prole. These are the features patients and parents felt needed attention and were examined for differences of responses between patients and their parents. Interviewer-Guided Questionnaires A total of 120 interviews were carried out with cleft lip and palate patients and their parents. Although the interviews were carried out successfully, some information bias could have been introduced through patients who may have attempted to

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TABLE 4 Reliability Analysis (Parents)*

Standard Deviation Scale Mean if Item Deleted Scale Variance if Item Deleted Corrected Item Total Correlation Alpha if Item Deleted

Mean

Speech Hearing Teeth Lips Nose Breathing Prole of face Mastication

3.3667 2.1667 4.4167 3.8667 3.9500 2.9000 3.0333 2.7167

1.6770 1.3675 1.7202 1.7989 1.8904 1.7822 1.6871 1.6984

23.0500 24.2500 22.0000 22.5500 22.4667 23.5167 23.3833 23.7000

71.1669 75.2415 73.2881 72.2178 66.1514 65.7116 67.6302 65.5017

.5282 .4980 .4305 .4406 .6244 .6935 .6648 .7471

.8298 .8335 .8419 .8416 .8177 .8083 .8128 .8020

* Reliability coefcients: n of cases 60.0; n of items 8; alpha .8427.

present themselves more favorably by giving positive responses. An interviewer who was a cleft team member was used to guide the respondents through the questionnaires because it provided an effective way to collect data; however, it was thought that respondents may be less likely to answer questions honestly if asked by a cleft team member, out of concern that their answers would impact future treatments (Turner et. al., 1997). In Malaysian society, where criticisms are not usually well received, patients often feel reluctant to disclose their true opinions. To further avoid bias, patients and parents were interviewed in separate rooms. Tables 4 and 5 show the results of reliability tests used to assess the consistency of questionnaire answers. Data Collection The researchers underwent training on how to administer the questionnaires to the patients and their parents in an unbiased manner to minimize intraexaminer variability. The questionnaires were then assessed in a pilot study to determine the test-retest reliability of answers provided by the patients and to estimate the time spent for each questionnaire. Questionnaires were administered twice within 1 week. Both the patients (r .9254, .9464) and parents (r .9681, .9031) were consistent in answering questions. The parents took about 40 minutes to complete the interview sessions, whereas the children took about 50 minutes each.

Statistical Analysis All data collected were coded and were keyed into the computer using SPSS Version 11.0.1 (SPSS Inc., Chicago, IL). Data checking was done as soon as data entry was completed. Descriptive and analytical statistics were performed for both child and parent interview schedules and the CEP. A weighted kappa statistic was used to test for agreement between parental and child pairs regarding forced choice questions about selfcondence and for the CEP. The signicance level chosen was p .05 with a 95% condence interval and a 5% error due to chance. A weighted kappa statistic was used, because it takes into account the degree of disagreement between the ranks assigned by the child and their parents. The interpretations of levels of agreement for the weighted kappa statistic used for the analysis were taken from the recommended classication by Altman (1999) (Table 6). Neither the childrens nor the parents rankings were regarded as the gold standard during the study. The kappa statistic was used merely to illustrate the frequency of matched ranks awarded by the parents and their children for the satisfaction with their cleft care outcome and whether parents perceptions of outcome differed from their childrens perceptions. Altmans classication of the levels of agreement, although arbitrary, nevertheless provides a useful guide for interpreting the weighted kappa statistic (Turner et al., 1997). Where appropriate, a Wilcoxon matched pairs signed rank sum test was used to illustrate signicant differences between a parent and his or her own childs rating of facial appearance

TABLE 5 Reliability Analysis (Patients)*

Standard Deviation Scale Mean if Item Deleted Scale Variance if Item Deleted Corrected Item Total Correlation Alpha if Item Deleted

Mean

Speech Hearing Teeth Lips Nose Breathing Prole of face Mastication

3.7667 1.8000 4.2167 3.9000 3.6667 2.7667 2.0167 2.8167

1.9166 1.2323 1.8784 1.8929 1.9972 1.7405 1.6208 1.8639

22.1833 24.1500 21.7333 22.0500 22.2833 23.1833 22.9333 23.1333

70.3556 84.6381 74.1989 72.1500 68.1048 69.8811 74.9785 66.4565

0.5762 0.2823 0.4582 0.5232 0.6208 0.6751 0.5327 0.5327

0.8060 0.8372 0.8224 0.8135 0.7995 0.7928 0.8120 0.7814

* Reliability coefcients: n of cases 60.0, n of items 8, alpha 0.8289.

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TABLE 6 Interpretation of strength of agreement for the kappa statistic

Value of Kappa (k) Strength of Agreement

0.20 0.210.40 0.410.60 0.610.80 0.811.00

Poor Fair Moderate Good Very good

(teeth, lip, nose, and prole). It was used because the sample size was small and the parent and child ratings were ordinal data. The total score of the patients and their parents on the CEP was chosen as a measure of satisfaction with the clinical outcome of cleft treatment. The cutoff value was 32; any score less than or equal to 32 showed that the patients and their parents were satised with the clinical outcome of cleft treatment, and scores greater than 32 showed that the patients and their parents were unsatised with the clinical outcome of cleft treatment. RESULTS Psychosocial Status of Cleft Lip and Palate Patients and Their Parents Teasing Of the patients interviewed, 75% said that they had been teased because of their cleft condition. The children stated that features directly related to their cleft condition were the source of teasing. Speech decits, lips, teeth, and nose were cited more frequently the source of teasing than were other features (Fig. 1). The children mentioned that teasing occurred as early as 4 years of age (24%) when they started kindergarten and persisted for some until they reached 17 years of age (4%). The highest frequency of the onset of teasing was noted when the patients were about 7 years of age (51%). About 67% of the patients stated that they were still being teased because of their cleft, even after some correction by surgical or orthodontic treatment, even though the frequency of teasing dropped. Sixty percent of the patients reported that the teasing had worried them. About 62% informed their parents and close friends about the teasing and a few informed their teachers at school. Approximately 68% of parents interviewed said their child had been teased because of his or her cleft condition. They noticed that their children were being teased as early as 2 years of age (32%). Self-Condence Eighty-three percent of the patients stated that their selfcondence was affected by their cleft condition; of these patients, 15% reported that their self-condence was very much affected. Parents were asked whether they felt their childs

FIGURE 1 The features that were the cause of teasing.

self-condence had been affected directly by the cleft condition. Seventy-eight percent felt that there was lower self-condence due to the cleft; about 7% of these parents felt that their childs self-condence was very much affected. During statistical analysis, the parents responses were then compared for agreement with their childs responses to the same questions. There was good agreement ( .625, p .05) between how parent/child pairs perceived the effect of the cleft on self-condence. Interactions With Cleft Team Even though 83% of the patients reported that their selfcondence was affected by their cleft condition, only a few informed their parents and their specialists during the clinical session. Most parents (68%) and their children (47%) felt at ease attending the clinic. Of the patients, 23% felt nervous attending the clinic and 22% felt that it was difcult for them to discuss matters with their specialists. During the discussion, 43% of the parents reported often feeling sad when thinking of having a child with a cleft, whereas 22% felt that they used to feel sad but not so much anymore. Approximately 53% felt that they did express their feelings to someone else, either their spouses or close relatives. About 58% felt that it was easy for them to tell specialists what was on their minds during the clinical session, and 48% felt that the specialists usually listen to their suggestions regarding their childs treatment. Approximately 65% of the parents and 52% of the patients reported that information given to them during the clinical session was easy to understand. About 22% of the patients reported that the information was difcult to understand. Approximately 40% of the patients wanted the meeting session with the specialists to be held separately. Only 18% wanted the meeting to be held with all the specialists in one room together. About 35% of the parents preferred the discussion or meeting with the specialists to be held separately.

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TABLE 7 Level of agreement between patients and their parents for perceived satisfaction with clinical outcome
Kappa Value Standard (k) Error (kappa) Probability (p) Level of Agreement

Feature

Speech Hearing Appearance of teeth Appearance of lip Appearance of nose Breathing Prole of face Mastication/Bite

0.513 0.334 0.430 0.469 0.434 0.399 0.348 0.314

0.073 0.085 0.075 0.076 0.075 0.079 0.073 0.071

0.000 0.000 0.000 0.000 0.000 0.000 0.000 0.000

Moderate Fair Moderate Moderate Moderate Fair Fair Fair

Families Contributions to Decisions Involving Childrens Treatment Patients and their parents were asked how involved they had been in making decisions about the childs treatment planning. About 42% of the parents felt that they were very involved in making decisions about their childs treatment, and 38% of the patients felt that they were usually involved in their own treatment. Approximately 8% felt that they were never involved in decision making and 45% felt that they made the treatment decision themselves. About 18% of the patients felt that the specialists made the decision about their treatment. Overall Satisfaction With Cleft Care About 37% of the parents were satised and 8% were disappointed with the surgical treatment of their child. The patients were asked whether their surgical operations were okay or not okay. Approximately 32% of the patients felt that their surgical treatment was not okay. About 82% said the specialists had given information about the surgery beforehand. Approximately 12% said there was no difference in their facial appearance after surgery, whereas 52% felt that they looked slightly different after the surgery. The patients and their parents were asked about their overall satisfaction with the cleft care. About 33% of the parents and 27% of the patients were very satised with their overall care and attention received from cleft care team members. Regarding the result and outcome of surgical treatment, approximately 27% of the parents and 23% of the patients were very satised. Some parents (23%) gave suggestions on how to improve the service provided by the cleft team members. Cleft Evaluation Prole Seventy-ve percent of the parents and 77% of the patients were satised (chi-square, p .05) with the clinical outcome of cleft treatment based on the total outcome score of the CEP. The patients perceived satisfaction was compared with their parents satisfaction with the clinical outcome (by linking the fathers name with the child). The weighted kappa statistic showed fair to moderate agreement between parent/child pairs for all items in the CEP (Table 7). The reliability analysis of the CEP, carried out to determine
TABLE 8 Cleft subject and parent differences for features related to facial appearance
Mean Signicance Subject p 0.05 Score 17 Mean Parent Score 17

FIGURE 2 Mean scores of the Cleft Evaluation Prole for the parent and child.

the internal consistency of the answers provided by the parents (Table 4) and their children (Table 5), showed they were consistent in answering the CEP ( [internal consistency reliability] .8427 for parents and .8289 for children). The mean scores of the CEP for both the patients and their parents are shown in Figure 2. Scores for the four features related to facial appearance that the patients and the parents felt needed attention (teeth, lip, nose, facial prole) were summed to assess differences between parent and child ratings. The parents and children did not differ in their satisfaction scores (Wilcoxon signed rank test, Table 8). DISCUSSION Psychosocial Status of Cleft Lip and Palate Patients and Their Parents Teasing Teasing is the phenomenon whereby repeated comments are made about one or more physical or social characteristics of a child in order to make fun of him or her (Shaw et al., 1980). Teasing appears to begin early in a childs life, with a few parents (32%) reporting that their children had been teased

Features

Z*

Teeth Lip Nose Prole Sum total score

0.925 0.543 1.193 0.076 0.403

0.355 0.587 0.233 0.939 0.687

NS NS NS NS NS

4.22 3.90 3.67 3.02 14.80

4.42 3.87 3.95 3.03 15.27

* Wilcoxon Signed Rank Test; NS not signicant.

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when they were only 2 years old. Some of the parents shielded their child from public not because of the childs deformities, but because they could not stand the teasing and embarrassment. This supports the ndings of Heller et al. (1981), where 27% of the parents felt embarrassment due to the childs disability and tried to hide their child from public attention. The incidence of teasing was not related to the patients age. It often occurred on a certain occasion (e.g., the start of a new school, living in a new neighborhood area, or after surgical operations). Patients stated that most of the time, they were teased at school, because they rarely met other students after school. The teasing sometimes occurred in public when the parents were with the child. Patients (67%) reported that they still were being teased, making it difcult for them to have many friends. The teasing worried them, because it affected their self-condence. The results of this study are in agreement with those of Noar (1991), where 54% of patients reported that their self-condence and their ability to have a boy- or girlfriend had been affected by their cleft condition. About 21% indicated that their relationships with family and friends had been greatly affected. Telling somebody about their problems made them feel happy and more secure. They reported that it would make them feel even better if, during treatment, there was a session in which they could discuss their treatment with one of the specialists or a psychiatrist. In another study, Thompson and Kent (2001) described self-presentation and self-protection strategies developed by cleft-affected patients to overcome teasing and rejection by the public and peers. The patients who kept the problems to themselves felt that they could create selfstrategies to overcome teasing without the help of others. These patients normally cried to themselves and were very good at hiding their problems. Patients with cleft lip and palate made up the majority of the sample in this study, followed by cleft palate only; thus speech defects would be their number one problem. Cleft lip and palate is often accompanied by speech defects (Bernstein and Kapp, 1981), with 60% of the children aficted with cleft palate requiring speech therapy at some time during their lives. Patients with a speech decit may have problems during conversation that lead to some degree of reduced intelligibility (Di Biase and Markus, 1998). Bradbury (1997) stated that children who look and sound physically different are noticed by others. They suffer a signicant level of teasing and bullying. They need to nd ways of developing self-esteem in order to build psychological resilience and to function well as adults. This may prove difcult to achieve and can be a lonely struggle, either because of feelings of protectiveness toward their parents or because they cannot admit that they are not coping. Self-Condence Patients (83%) in this study felt they had low self-condence because of their cleft condition, in concordance with other studies (Noar, 1991; Turner et al., 1997). Approximately 78% of the parents felt that their childs self-condence was

affected adversely by their cleft condition. This supports the ndings of Noar (1991), where 47% of the parents felt that their child had been socially or emotionally affected by the cleft. Some parents reported that due to low self-condence, children did not want to meet people and tried to hide themselves, and some did not want to play with their siblings. Couples who had more than one child noticed that the cleft-affected child did not mix freely with the other siblings. This result is also in agreement with Turner et al. (1997), where 15% of parents felt that there was lower self-condence due to the cleft. Some parents (17%) stated that their child felt shy, rarely talked to strangers, tended to hide behind their parents backs when in public, and felt reluctant to go out with them, to go shopping, or to travel to other places. These ndings also support the nding of Ramstad et al. (1995) that 45% of the cleftaffected individuals studied were troubled by psychosocial problems, making them shy away from noncleft individuals and tending to isolate themselves. Turner et al. (1997) reported that approximately 59% of parents of 15-year-old patients thought that their children were shy, although parents were unsure whether this was due to the cleft or just a teenage phase. The self-condence of patients with cleft lip and palate was more affected (87%) than those with cleft palate only (75%). Whereas the deformity in cleft palate only is not visible to others, this is not the case for those with cleft lip and palate. Richman and Harper (1980) stated that the more severe the deformity a person has, the lower the self-condence of the affected individual. When interviewed, the patients said that they felt shy and unable to talk freely in public, especially during school when their teachers asked them to read aloud in front of other classmates. A few patients reported that some people would laugh at them when they began to talk. These problems made some of the patients try to avoid being chosen by their teacher to read or taking part in any activities involving talking. When at home, few friends wanted to come to their house and play with them. They rarely wanted to go outside and play with their friends in the neighborhood because of fear of rejection. They preferred to stay at home and play with their siblings or to help their parents do housework. Patients who were 16 and 17 years old felt their self-condence was affected by their condition as compared with younger patients. At this age, they are maturing into adulthood and interactions with the opposite sex are considered necessary for them. Therefore, a lower self-condence would affect their chance of having friends. This result supported the ndings by Ramstad et al. (1995), where the cleft subjects felt unsure of having close friends (13%), had fewer daily visit with friends (30%), and had fewer close friends with whom to interact (37%), especially among the group of men with clefts (50%). Shaw et al. (1980) stated that the long-term effects of teasing on the development of personality are undetermined, but one may readily imagine that for some children, sustained ridicule and insult may predispose them to lower self-condence and alienation.

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Interaction With Cleft Team Approximately 22% of the patients felt that it was difcult for them to discuss matters regarding their problems with their specialists, especially among the female patients. This may be due to many reasons. For example, feelings of intimidation among the patients themselves because of their deformities and the atmosphere in the cleft clinic itself could make these patients reluctant to talk. In the cleft clinic, the cleft patients and their parents typically would be seated in a waiting room with other patients while waiting to be seen. If too many patients were called at a certain period, this also would inhibit discussion with the specialists. The patients and their parents would feel pity for each other and would tend to nish their session early, hoping that other candidates would be called soon. There were other factors that could inhibit discussion between the patients, parents, and the specialists. The long journey to the cleft clinic could have overshadowed the purpose of attending the appointment. In 25% of the cases, where the traveling period was more than 1.5 hours using public transportation (bus, taxi), subjects might have been too tired. Tiredness and feelings of time wasted during long journeys could have made the families forget the intended topics for discussion. Williams and Marcus (1998) reported that based on an audit done in the U.K., 30% of families lived more than one hours traveling time from a cleft center, and 36% reported difculties in attending the clinic despite the fact that approximately half lived less than one hours journey from it. The reason given for these difculties were, in part, distance, but also the amount of time taken off work, loss of earnings, arrangements for care of other family members, and children missing school. The majority of the parents (43%) often felt sad when they think or talk about their childs cleft to others. About 12% were always very sad to talk or think about it. This supports the ndings of Bradbury and Hewinson (1994), where 48% of the parents of children with a cleft lip and palate reported that their sadness, feeling of overt grieving, and distress took weeks or even months to resolve, and some 20% of them still had unresolved feelings about having a child with a cleft. Approximately 53% of the parents wanted to be given a chance to talk about the matter to someone else, be it specialists, close friends, relatives, or spouse. As suggested by Bernstein and Kapp (1981), it is also important that parents feel accepted by their professional helpers. They need a chance to express their rage at physicians and at life regarding their childs condition. In their relationship with professionals, parents can gain support, a realistic perspective, and a chance to move toward active, realistic methods of coping with the problems of cleft palate. Explanations given by cleft care team members were easy to understand, as reported by the patients (52%) and their parents (65%). A small proportion of patients (22%) reported that the explanation provided was difcult to understand. This may be due to factors such as the age of treatment and

the nonavailability of the information in written form. The treatment of these children is carried out at an early age, when the cognitive development and learning process of these children is not fully developed. At the same time, children who have a cleft have a tendency for delays in cognitive development (Joycelyn et al., 1996). The way in which the explanation was given to the patient and his or her parents might also inuence the interaction with the specialists. These parents suggested that the explanation and information about their childs treatment should be given in written form. The importance of written information was proven by Paynter et al. (1990), where more than 92% of the respondents felt that receiving a written copy of the recommendations was helpful. Approximately 40% of the patients interviewed want the meeting session with the specialists to be held separately. They felt that they would be freer to talk about their problems with one specialist at a time. Perhaps they wanted the specialist to pay more attention to them. The patients reported that there were normally four to ve specialists in the rooms discussing their treatment plan. Having too many specialists in one room discussing treatment plans could inhibit discussion among the patients, their parents, and the specialists. The parents also preferred the meeting with the specialists to be held separately (35%). This would enable them to concentrate on one matter at a time and to understand more of their childs cleft condition and related problems. It is crucial for the cleft care team to incorporate a psychology session for the patients and their parents. This would aid in lessening their worry, making the child more condent, easing the parents problems, and helping them to better enjoy their lives. Lansdown et al. (1991) suggested that a psychology session should be aimed at the whole family, rather than just the child. Asking children directly about their experiences of being stared at could be a painful reminder to them of their disgurement, but in fact, the children and families reported on here were pleased with the opportunity to discuss their difculties with a sympathetic outsider. Families Contributions to Decisions Involving Child Treatment The contribution of the family in deciding the best treatment for their child inuenced the childs reaction toward the treatment outcome. Approximately 42% of the parents and 32% of the patients were very involved in making treatment decisions. It is therefore important that treatment not be forced on those patients who do not perceive that they have a problem, because they are unlikely to cooperate. The childs cooperation is required if treatment is to be successful and, unfortunately, an enthusiastic parent does not always have an enthusiastic and motivated child (Cunningham, 1999). Although most parents were involved in making treatment decision about their child, about 8% of the patients said that they were never involved in treatment decision making. They said that their parents and the specialists were in charge

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of the treatment planning and they would follow whatever is best for them. This is not good for the patients well-being, because if the treatment outcome does match the parents expectation, they might one day be blamed for what had happened. McCarthy et al. (2001) stated that researchers cannot assume that parents will be accurate in their assessment of their own childs concerns. Bradbury and Hewinson (1994) mentioned that it does seem that visible disgurement causes parents particular distress. The ability of parents to accept their child and form an affectionate bond is of crucial importance for the childs psychosocial development and well-being. Parents who have experienced insecure attachment themselves may have particular difculty adjusting to the needs of their disgured child, and the failure of grandparents to support the parents may be indicative of other problems in this relationship. The patients, on the other hand, may have no one to blame for what has happened and could tend to feel guilty themselves for being born and having a cleft. This would have a negative effect on the childs self-condence, possibly leading to isolating themselves from their parents and the public. Overall Satisfaction With Cleft Care Approximately 33% of the parents and 27% of the patients were very satised with the care and attention given by the cleft team members. About 27% of the parents and 23% of the patients were very satised with the result and outcome of the surgical treatment. The degree of satisfaction noted indicates the effectiveness of screening, referral, and treatment facilities within the health system in the country; it is gratifying to note that the condition has been treated by the time children are in primary school (NOHSS, 1997). These results support the ndings of Noar (1991), where 80% of the parents were satised with the surgical results, 90% were satised with orthodontic treatment, and 70% were satised with speech therapy. Seventeen percent were not satised with the surgical results of their child. Overall, there was a feeling of satisfaction among both patients and their parents. These attitudes are formed as a result of interaction between the providers and cleft team members. Thus, patient satisfaction has been used as a measure of the outcome of cleft care. Factors that can affect level of satisfaction with the cleft team include the mechanism for scheduling an appointment, travel time to the clinic, waiting time at the clinic, and information about the condition and its treatment. Additional factors noted by others include accessibility, cost, pain, quality and technical competence, and patient-personnel interaction (Chen and Anderson, 1997). Nevertheless, one parent felt very not satised with the care and attention given by the team members, and 8% were not satised with the result and outcome of the surgical treatment. The dissatisfaction arose due to poor surgical results and poor communication between specialists and the parents. The parents stated that sometimes they were not in agreement with the specialists about their childs treatment plan. Some of

the specialists were not very friendly during the discussion session with parents whose suggestions included wanting truly qualied surgeons to conduct the operation. Indeed, surgeons who are more experienced in operating on children with cleft lip and palate have demonstrably better results in their operations than less experienced surgeons do (Williams et al., 1999). Approximately 23% of the parents offered suggestions on how to improve the care, attention, and treatment provided by the specialists. Within this group of parents, some also complained about the unsuccessful surgical treatment. One complained that his or her child had to undergo surgery twice because the palatal closure failed, causing a stula. This cost them time and money to return to the clinic for treatment. The ndings are consistent with previous research by Paynter et al. (1990) that showed 17% of subjects had nancial problems and had difculty scheduling appointments around a job when seeing the team or other professionals. Some parents requested that their childs treatment program not disturb the patients schedule, especially during the school examination period, because they were afraid this might affect their childs school progress, a concern raised previously by King et al. (1994). Psychological team evaluation should be offered routinely to patients, beginning in early infancy and ending when the patient completes treatment (Tobiasen and Speltz, 1996). The cleft lip and palate team as a whole should collaborate to provide an integrated approach to the patients care. That said, there appear to be no guidelines as to the level of psychosocial problems in cleft lip and palateaffected individuals who need psychiatric referral (Turner et al., 1998). There are many benets associated with having a multidisciplinary craniofacial clinic in one center. All specialists necessary for the care of the child with a cleft lip and/or palate can be found in one location. It also would be benecial to incorporate social skills training for individuals with facial disgurements, such as the patients in this study. A camping program, jungle trekking, seminars on how to improve patients well-being (especially when meeting new people), and involvement in a community project with others can be advocated as social skills training for these cleft-affected individuals. This can, in a way, help them in their attempts to counteract the stigma of their facial appearance. Cleft Evaluation Prole Mean CEP scores for the patients and their parents are shown in Figure 2. For the parents, the highest mean score achieved was for the teeth, followed by the nose, lips, and speech. For the patients, the highest mean score achieved was for the teeth, followed by the lips, speech, and nose. Patients and their parents were least satised with teeth, because most patients had teeth that were not well aligned and had not yet undergone orthodontic treatment. This was evidenced by the fact that about 52% needed further treatment, especially in orthodontics and surgery. The teeth obviously contribute to

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facial appearance, and dental anomalies can be the target for abuse (Shaw et al., 1980). Thus, it is important for these children to receive multidisciplinary treatment from various dental specialties and to be referred to the designated consultants for future treatments. Speech and hearing difculties are a common occurrence in patients with cleft lip and/or palate and may present a possible barrier to satisfactory communication. Di Biase and Markus (1998) reported that in cleft lip and palate patients, speech was found to be unintelligible to strangers in 19% of 5-year-olds and 4% of 12-year-olds. Speech was deemed different enough to evoke comment in 32% of the 5-year-olds and 15% of the 12-year-olds. There was also some hearing loss in 21% of the 5-year-olds and 16% of the 12-year-olds. Hypernasality (excessive nasal tone) was found to be present in 27% of the 5-year-olds and 31% of the 12-year-olds. Speech is a major characteristic that patients are teased about by their peers. Children with cleft palate only mentioned that the defect was unnoticeable until they opened their mouths to speak; when people heard the broken speech, those people tended to withdraw from them. This study supported the ndings of Millard and Richman (2001), in which children with cleft palate have more speech problems than do children with other types of cleft. The children with cleft palate only may show greater problems with depressive symptoms and anxiety and more learning problems than children with cleft lip and palate. This may be explained partially by the relationships identied between self-report of symptoms and speech difculties that can create problems in both adjustment and learning. It appears that these risk factors (self-reported symptoms like self-perception, anxiety, and depression) are exacerbated by speech difculties, suggesting that children with cleft palate who have signicant speech difculties and learning problems should receive careful monitoring and aggressive treatment, not just for cleft-related conditions, but also for possible learning and adjustment problems. Based on these ndings, children with cleft palate have signicantly lower selfesteem, some self-perceived depressive symptoms and anxiety, more speech problems, and more learning problems compared with those with cleft of the lip, either unilateral or bilateral. These ndings demonstrated the need to consider different risk factors (e.g., speech, face, adjustment, and learning) for different cleft groups. The reported dissatisfaction with speech and appearance points to the need for closer collaboration between counseling and clinical services. Counseling sessions will help patients address their problems and speak more. This study asked how the parent felt when talking and thinking about the cleft and offered a chance to talk over these concerns with anyone on the team. Forty-three percent often felt sad when thinking of having a child with cleft, whereas 22% felt that they used to feel sad but not so much anymore. Thus, the counseling session also should be made available for the parents of these children so that they will be able to share their feelings about having a child with cleft lip and/or cleft palate. This study showed that there was no statistically signicant

difference between the parent and child ratings for the four features related to facial appearance (teeth, lips, nose, and prole of the face). This may be explained by the fact that children of Asian cultures are very obedient and tend to agree with their parents. This is supported by the observation that 42% of the parents were very involved in deciding treatment for the child. A few patients were accompanied by grandparents who had an untreated cleft. In our society, each persons beliefs are important for his or her well-being. Having a cleft is not something that the patients or their parents want, but their beliefs and religion dictate that they accept the cleft condition as a fate from God. This may have some effect on the satisfaction with cleft treatment, because they can accept whatever the outcome of the surgical treatment and at the same time not want any treatment to the cleft-affected area. If the grandparents did not want treatment, it might inuence the childs perception of the impact of surgery. Further, the education level of their parents (only 12% had tertiary education) also may have inuenced the childs feeling of satisfaction with surgical treatment. Parental level of education and their knowledge in understanding the disease process and the many treatment alternatives that are available for the cleft lip and palate children is important, because this will affect the satisfaction of the child and their parents. The results of this study differ from those of Turner et al. (1997), who found that two features (teeth and lip) differed signicantly between the parents and 15-year-old subjects. They reported that this was an important nding for cleft care teams, because treatment planning may be based purely on the opinions of the parents if the childs involvement in the discussion is minimal. This points to the need to carefully address a childs opinion of his or her clinical outcome independently from the parents. In contrast to Turner et al. (1997), there were no differences in the current study between the child and parent ratings for features related to facial appearances in all age groups. This may be due to a number of factors, including differences in cultural background (most of our sample still practice traditional values), exposure of the patients to the external environment (many patients still kept their traditional culture and beliefs), the area of residence (most patients were from rural areas far from the main city), and the level of education of subjects in the current sample compared with those studied in the U.K. A few limitations of this study and directions for future research must be acknowledged. No comparison was made between the cleft lip and/or palate patients and normal children. The sample size was rather small (n 60) and most patients were from the Kota Bharu area. Patients from other towns in Kelantan were unable to come, because they lived very far from Kota Bharu and the traveling was very time consuming (almost an entire day). When informed about the study, most parents felt a bit reluctant to take part unless their child was given concurrent dental treatment. This would save them time and additional travel expenses. A few parents even

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suggested that their traveling expenses and lodging be covered by the center where their child received treatments. This was especially true for patients who lived very far from Kota Bharu or in other nearby states like Terengganu and Pahang. The researchers chose Kota Bharu as the main location rather than other areas in Kelantan state, because many of the dental specialist clinics are located there. Furthermore, a referral center like HUSM needs to be developed for craniofacial patients in the eastern region of West Malaysia, due to the lack of referral centers in the area. Turner et al. (1997) used the CEP to assess the perceived satisfaction for individual features related to cleft care treatment. During the study, subjects with different types of cleft were asked questions about the same features. This may have reduced the signicance of the results for features like appearance of the lip, because the CEP results from patients with cleft palate only were grouped together with those from patients with cleft lip only or cleft lip and palate. Therefore, larger numbers of subjects in different cleft subgroups would allow for a better understanding of differences between the subgroups. Future studies using the CEP with noncleft subjects would allow for a comparison of ratings between cleft and noncleft subjects. This would help in identifying how satised nonaffected children are with their facial features. Psychological sessions need to be incorporated in the treatment plan of these cleft lip and/or palateaffected individuals, and psychological aspects regarding the cleft lip and/or palate need to be assessed regularly. There is a continuing need for longitudinal data regarding the psychosocial aspects of individuals with cleft lip and/or palate. Finally, due to the difculty and barriers associated with utilizing the cleft lip and palate clinic, it is recommended that the government set up clinics in several centers in each state, and that the services of multidisciplinary team members be made available at each center. A national register that records the presence of these cleft lip and/or palate individuals should be established so that pooling of data can be accomplished in future research studies. Provision of a more diverse multidisciplinary team approach to manage the cleft lip and/or palate affected individual from infancy to adulthood is recommended also. Treatment such as orthognathic surgery, orthodontics, speech therapy, treatment of hearing loss, and maintenance of oral hygiene should be available to all affected patients. CONCLUSION A majority of the patients questioned were being teased because of their cleft condition, and they stated that their selfcondence was affected by the cleft condition. The patients and their parents both were satised with the cleft treatment that had been provided by the cleft team members at the center. The teeth, lips, speech, and nose were the features the patients and parents felt needed attention. Patients with cleft palate only had more speech problems than did cleft lip patients with or without cleft palate. The differences in the ratings of the CEP

showed by the patients and their parents as compared with other studies might be due to different background of the sample in this study and area of the study where the sample lived.
Acknowledgments. This project was made possible through the support of staffs and lecturers at the University of Malaya and Universiti Sains Malaysia. We are grateful to Professor Jonathan R. Sandy from University of Bristol Dental School for his kindness and permission to use the questionnaires and CEP evaluation form, and to Dr. Rachel Coxon from the Womens and Childrens Hospital, North Adelaide, Australia, for providing the booklet regarding ways of coping and strategies for dealing with other peoples reactions. We are also grateful to Professor Rahmah Noordin for her help in editing the manuscript.

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