assessment of patients' level of satisfaction with cleft treatment using the cleft evaluation...

7/27/2019 Assessment of patients' level of satisfaction with cleft treatment using the cleft evaluation profile

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292

Assessment of Patients Level of Satisfaction With Cleft Treatment Using

the Cleft Evaluation Profile

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 Inter-

view Schedule, and the Cleft Evaluation Profile (CEP), administered via indi-

vidual interviews.

Results: Patients were teased because of their clefts and felt their self-con-

fidence 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-confidence was affected by the clefts. Both showed a sig-

nificant 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 pa-

tients 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.

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 com-

pared 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 sec-

ondary 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 Den-

tistry, 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 Psycho-

logical 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 Den-

tistry Unit, School of Dental Sciences, Universiti Sains Malaysia, Health Cam-

pus, 16150 Kubang Kerian, Kelantan, Malaysia. E-mail [email protected].

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 pal-

ate patients were perceived to have lower self-esteem, diffi-

culty in the learning process, and a tendency to be more de-

pressed 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 difficulty meeting new

friends because of their deformity (Richman and Harper, 1980;

Heller et al., 1981).

Based on examinations carried out by mental health profes-

sionals, 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 psycho-

social referral. The sample consisted of patients ages 11

months to 18 years. They reported that the incidence of psy-


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Noor and Musa, PSYCHOSOCIAL ASPECT OF CLEFT LIP AND/OR PALATE 293

TABLE 1 Sociodemographic Characteristics of the Patients

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

Total 60 100

Age group (y) 12

13

14

15

1617

6

9

9

14

1210

10.0

15.0

15.0

23.3

20.016.7

Gender Boy

Girl

25

35

41.7

58.3

Ethnicity Malay

Chinese

Indian

58

1

1

96.7

1.7

1.7

Type of cleft Lip

Lip and alveolus

Lip and palate

Palate

Submucous

13

2

32

12

1

21.7

3.3

53.3

20.0

1.7

Level of education Primary school

Secondary school

8

52

13.3

86.7

TABLE 2 Sociodemographic and Economic Characteristics of

the Parents

CharacteristicsNumber of Parents

(n)Percentage

(%)

Total 60 100

Level of education Primary school

Secondary school

College/University

21

32

7

35.0

53.3

11.7Gross household in-

come per month

RM1000*

RM10002999

RM30004999

RM50009999

RM10,000

43

14

2

1

71.1

23.3

3.3

1.7

Employment Government servant

Private sector

Skilled

Semiskilled

Laborer

10

20

2

3

25

16.7

33.3

3.3

5.0

41.7

* RM Ringgit Malaysia, the Malaysian currency.

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 psy-

chosocial problems. Psychosocial problems were more fre-

quently found among males (69%) as compared with females

(42%). They used behavioral observations, standardized test

results, parental and school reports, and interview data to as-

sess these patients psychological status. Psychosocial referrals

were made in response to problems or deficits in at least one

of four main dimensions: cognitive problems, adaptive behav-

ior problems, emotional instability, and family instability.

Functional and aesthetic problems frequently arise from

clefts of the lip or palate. During infancy, these patients, likethose with isolated cleft defects, experience difficulties with

feeding. Later in life, they will experience some difficulties

with speech development and hearing loss and may have psy-

chological 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 Bern-

stein and Kapp (1981). For 2 years, they observed 60 adoles-

cents 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 peo-

ple 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, par-

ticularly during adolescence.

Facial aesthetics has universal importance, but it is of par-

ticular importance in the field of dentistry. The face has pro-

found social significance. 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 at-

tractiveness 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 re-

action 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 psycho-

social 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 HospitalUniversiti Sains Malaysia (HUSM), Kelantan, Malaysia. At the

same time, this study sought to assess the reliability of the

Cleft Evaluation Profile (CEP) and the parent-child agreement

of satisfaction with the cleft treatment.

MATERIALS AND METHODS

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 pal-

ate 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 neu-

rological 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 In-

stitutional Review Board approval at HUSM. The subjects

psychosocial status and their perceived satisfaction with treat-

ment were assessed using the questionnaires described below

and the CEP.


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294 Cleft PalateCraniofacial Journal, May 2007, Vol. 44 No. 3

TABLE 3 Cleft Evaluation Profile

Please Circle the Number That Is Closest to HowThings Are for You (Patient) / Your Child (Parent)

Now. Office Use

A. Speech A. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7

B. Hearing B. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7

C. Appearance of the teeth C. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7

D. Appearance of the lip D. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7

E. Appearance of the nose E. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7

F. Breathing through the nose F. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7G. Profile of the face G. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7

H. Bite H. Very satisfac to ry Ve ry u nsatisfac to ry

1 2 3 4 5 6 7

Questionnaires

Semistructured Questionnaires

The Child Interview Schedule (Turner et al., 1997) and the

Parents Interview Schedule (Turner et al., 1997) were admin-

istered to the patients and their parents. Before conducting thestudy, the questionnaires were sent independently to a psy-

chologist and public health officer for proofreading. The psy-

chologist and public health officer were asked to identify the

objective intended for each of the questionnaires. Any parts of

the questions that were queried or unclear were modified ac-

cordingly. Minor alterations were made to the two question-

naires. On the Child Interview Schedule, Can you remember

coming to this clinic? was replaced with Is this your first

visit to this clinic? How do you find coming to this clinic?

was replaced with How do you feel when attending the clin-

ic? 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 superfluous 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 emo-

tional issues such as teasing and self-confidence also was in-

cluded. Questions were constructed using coded forced re-

sponse 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-confidence 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 indepen-

dently with each respondent. Confidentiality 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 Profile

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 re-

lated to cleft care (Table 3). It consists of an eight-item list:

speech, hearing, lip, nose, teeth, bite, breathing, and profile.

For each item in the CEP, subjects were asked to rate their

satisfaction on a 7-point Likert scale ranging from very sat-

isfactory (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 profile) were

analyzed. Previous work with the CEP administered via indi-

vidual 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 significant

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 sta-

tistics is limited to investigation of frequency of agreement

between groups and will not indicate how these groups differ

or whether the difference is significant (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 de-

termine any significant differences in the parent and child rat-

ings of the features that were related to facial appearance,

namely teeth, lips, nose, and facial profile. These are the fea-

tures patients and parents felt needed attention and were ex-

amined 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)*

MeanStandard

DeviationScale Mean if Item

DeletedScale Variance if

Item DeletedCorrected ItemTotal Correlation

Alpha if ItemDeleted

Speech

Hearing

Teeth

Lips

NoseBreathing

Profile of face

Mastication

3.3667

2.1667

4.4167

3.8667

3.95002.9000

3.0333

2.7167

1.6770

1.3675

1.7202

1.7989

1.89041.7822

1.6871

1.6984

23.0500

24.2500

22.0000

22.5500

22.466723.5167

23.3833

23.7000

71.1669

75.2415

73.2881

72.2178

66.151465.7116

67.6302

65.5017

.5282

.4980

.4305

.4406

.6244

.6935

.6648

.7471

.8298

.8335

.8419

.8416

.8177

.8083

.8128

.8020

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

TABLE 5 Reliability Analysis (Patients)*

MeanStandard

DeviationScale Mean if Item

DeletedScale Variance if

Item DeletedCorrected ItemTotal Correlation

Alpha if ItemDeleted

Speech

Hearing

Teeth

Lips

Nose

Breathing

Profile 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 coefficients: n of cases 60.0, n of items 8, alpha 0.8289.

present themselves more favorably by giving positive respons-

es. 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 ques-

tions 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 in-

terviewed in separate rooms. Tables 4 and 5 show the results

of reliability tests used to assess the consistency of question-

naire answers.

Data Collection

The researchers underwent training on how to administerthe questionnaires to the patients and their parents in an un-

biased 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. Ques-

tionnaires 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 com-

puter 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 self-

confidence and for the CEP. The significance level chosen was

p .05 with a 95% confidence 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 interpreta-

tions of levels of agreement for the weighted kappa statistic

used for the analysis were taken from the recommended clas-

sification 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 illus-trate the frequency of matched ranks awarded by the parents

and their children for the satisfaction with their cleft care out-

come and whether parents perceptions of outcome differed

from their childrens perceptions. Altmans classification 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 significant differences between

a parent and his or her own childs rating of facial appearance


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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

FIGURE 1 The features that were the cause of teasing.

(teeth, lip, nose, and profile). 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 out-

come of cleft treatment. The cutoff value was 32; any score

less than or equal to 32 showed that the patients and their

parents were satisfied with the clinical outcome of cleft treat-

ment, and scores greater than 32 showed that the patients and

their parents were unsatisfied with the clinical outcome of clefttreatment.

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 deficits, lips, teeth, and nose were citedmore 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 par-

ents and close friends about the teasing and a few informed

their teachers at school. Approximately 68% of parents inter-

viewed 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-Confidence

Eighty-three percent of the patients stated that their self-

confidence was affected by their cleft condition; of these pa-

tients, 15% reported that their self-confidence was very much

affected. Parents were asked whether they felt their childs

self-confidence had been affected directly by the cleft condi-tion. Seventy-eight percent felt that there was lower self-con-

fidence due to the cleft; about 7% of these parents felt that

their childs self-confidence was very much affected. Dur-

ing statistical analysis, the parents responses were then com-

pared 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-confidence.

Interactions With Cleft Team

Even though 83% of the patients reported that their self-

confidence 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 difficult for

them to discuss matters with their specialists. During the dis-

cussion, 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. Approxi-

mately 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 spe-

cialists 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 ses-

sion was easy to understand. About 22% of the patients

reported that the information was difficult 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

FeatureKappa Value

(k)Standard

Error (kappa)Probability

(p)Level of

Agreement

Speech

Hearing

Appearance of teeth

Appearance of lipAppearance of nose

Breathing

Profile of face

Mastication/Bite

0.513

0.334

0.430

0.4690.434

0.399

0.348

0.314

0.073

0.085

0.075

0.0760.075

0.079

0.073

0.071

0.000

0.000

0.000

0.0000.000

0.000

0.000

0.000

Moderate

Fair

Moderate

ModerateModerate

Fair

Fair

Fair

FIGURE 2 Mean scores of the Cleft Evaluation Profile for the parent

and child.

TABLE 8 Cleft subject and parent differences for features

related to facial appearance

Features Z* PSignificance

p 0.05

MeanSubject

Score 17

MeanParent

Score 17

Teeth

Lip

Nose

Profile

0.925

0.543

1.193

0.076

0.355

0.587

0.233

0.939

NS

NS

NS

NS

4.22

3.90

3.67

3.02

4.42

3.87

3.95

3.03

Sum total score 0.403 0.687 NS 14.80 15.27

* Wilcoxon Signed Rank Test; NS not significant.

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 owntreatment. Approximately 8% felt that they were never in-

volved 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 satisfied 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 differ-

ence 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 satisfied with their overall

care and attention received from cleft care team members. Re-

garding the result and outcome of surgical treatment, approx-

imately 27% of the parents and 23% of the patients were very

satisfied. Some parents (23%) gave suggestions on how to

improve the service provided by the cleft team members.


Seventy-five percent of the parents and 77% of the patients

were satisfied (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

the internal consistency of the answers provided by the parents

(Table 4) and their children (Table 5), showed they were con-

sistent in answering the CEP ( [internal consistency reliabil-

ity] .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 profile) 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


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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 embarrass-

ment. This supports the findings of Heller et al. (1981), where

27% of the parents felt embarrassment due to the childs dis-

ability and tried to hide their child from public attention. The

incidence of teasing was not related to the patients age. Itoften 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 difficult for them to have many friends. The teasing

worried them, because it affected their self-confidence. The

results of this study are in agreement with those of Noar

(1991), where 54% of patients reported that their self-confi-

dence and their ability to have a boy- or girlfriend had been

affected by their cleft condition. About 21% indicated thattheir 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 self-

strategies 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 afflicted with cleft

palate requiring speech therapy at some time during their lives.

Patients with a speech deficit may have problems during con-

versation 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 significant level of teasing and bullying. They

need to find ways of developing self-esteem in order to build

psychological resilience and to function well as adults. This

may prove difficult to achieve and can be a lonely struggle,

either because of feelings of protectiveness toward their par-

ents or because they cannot admit that they are not coping.

Self-Confidence

Patients (83%) in this study felt they had low self-confi-

dence 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-confidence was

affected adversely by their cleft condition. This supports the

findings 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-confidence, chil-

dren did not want to meet people and tried to hide themselves,

and some did not want to play with their siblings. Coupleswho 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-confidence 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 findings also sup-

port the finding of Ramstad et al. (1995) that 45% of the cleft-

affected 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 patientsthought that their children were shy, although parents were

unsure whether this was due to the cleft or just a teenage

phase.

The self-confidence 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-confidence 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 involv-

ing 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 be-

cause 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-con-

fidence 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-confidence would affect their

chance of having friends. This result supported the findings 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-confidence and

alienation.


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Interaction With Cleft Team

Approximately 22% of the patients felt that it was diffi-

cult 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 intim-

idation among the patients themselves because of their defor-mities 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 typi-

cally 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 finish their session early, hoping

that other candidates would be called soon.

There were other factors that could inhibit discussion be-

tween the patients, parents, and the specialists. The long jour-

ney to the cleft clinic could have overshadowed the purpose

of attending the appointment. In 25% of the cases, where thetraveling period was more than 1.5 hours using public trans-

portation (bus, taxi), subjects might have been too tired. Tired-

ness and feelings of time wasted during long journeys could

have made the families forget the intended topics for discus-

sion. 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

difficulties in attending the clinic despite the fact that approx-

imately half lived less than one hours journey from it. The

reason given for these difficulties were, in part, distance, but

also the amount of time taken off work, loss of earnings, ar-

rangements 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 findings 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. Approx-

imately 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 sup-

port, a realistic perspective, and a chance to move toward ac-

tive, 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 difficult 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 chil-

dren is not fully developed. At the same time, children who

have a cleft have a tendency for delays in cognitive develop-

ment (Joycelyn et al., 1996).

The way in which the explanation was given to the patientand his or her parents might also influence 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 recom-

mendations 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 five specialists in the rooms discussingtheir 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 psy-

chology session for the patients and their parents. This would

aid in lessening their worry, making the child more confident,

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

disfigurement, but in fact, the children and families reported

on here were pleased with the opportunity to discuss their dif-

ficulties with a sympathetic outsider.

Families Contributions to Decisions Involving Child

Treatment

The contribution of the family in deciding the best treatment

for their child influenced the childs reaction toward the treat-

ment outcome. Approximately 42% of the parents and 32% of

the patients were very involved in making treatment deci-

sions. 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


9/12


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 ex-

pectation, they might one day be blamed for what had hap-

pened. 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 disfigurement causes parents particular distress.

The ability of parents to accept their child and form an affec-

tionate bond is of crucial importance for the childs psycho-

social development and well-being. Parents who have experi-

enced insecure attachment themselves may have particular dif-

ficulty adjusting to the needs of their disfigured 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-confidence, possibly leading to isolating themselves fromtheir parents and the public.

Overall Satisfaction With Cleft Care

Approximately 33% of the parents and 27% of the patients

were very satisfied with the care and attention given by the

cleft team members. About 27% of the parents and 23% of

the patients were very satisfied with the result and outcome

of the surgical treatment. The degree of satisfaction noted in-

dicates the effectiveness of screening, referral, and treatment

facilities within the health system in the country; it is grati-

fying to note that the condition has been treated by the time

children are in primary school (NOHSS, 1997). These results

support the findings of Noar (1991), where 80% of the parents

were satisfied with the surgical results, 90% were satisfied with

orthodontic treatment, and 70% were satisfied with speech

therapy. Seventeen percent were not satisfied with the surgical

results of their child.

Overall, there was a feeling of satisfaction among both pa-

tients 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 satisfac-

tion 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 satisfied with the

care and attention given by the team members, and 8% were

not satisfied 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

qualified 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 oper-

ations 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 com-

plained about the unsuccessful surgical treatment. One com-

plained that his or her child had to undergo surgery twice

because the palatal closure failed, causing a fistula. This cost

them time and money to return to the clinic for treatment. The

findings are consistent with previous research by Paynter et al.

(1990) that showed 17% of subjects had financial problems

and had difficulty 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 schoolexamination 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 pro-

vide 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 benefits associated with having a multidis-

ciplinary craniofacial clinic in one center. All specialists nec-

essary for the care of the child with a cleft lip and/or palate

can be found in one location. It also would be beneficial to

incorporate social skills training for individuals with facial dis-

figurements, such as the patients in this study. A camping pro-

gram, jungle trekking, seminars on how to improve patients

well-being (especially when meeting new people), and in-

volvement in a community project with others can be advo-

cated as social skills training for these cleft-affected individ-

uals. This can, in a way, help them in their attempts to coun-

teract the stigma of their facial appearance.


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 satisfied 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


10/12


facial appearance, and dental anomalies can be the target for

abuse (Shaw et al., 1980). Thus, it is important for these chil-

dren to receive multidisciplinary treatment from various dental

specialties and to be referred to the designated consultants for

future treatments.

Speech and hearing difficulties are a common occurrence in

patients with cleft lip and/or palate and may present a possiblebarrier 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 (ex-

cessive 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 peo-ple tended to withdraw from them. This study supported the

findings 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 rela-

tionships identified between self-report of symptoms and

speech difficulties 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 ex-

acerbated by speech difficulties, suggesting that children with

cleft palate who have significant speech difficulties and learn-

ing problems should receive careful monitoring and aggressive

treatment, not just for cleft-related conditions, but also for pos-

sible learning and adjustment problems. Based on these find-

ings, children with cleft palate have significantly lower self-

esteem, 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 findings demonstrated the need to consider different risk

factors (e.g., speech, face, adjustment, and learning) for dif-

ferent 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 significant

difference between the parent and child ratings for the four

features related to facial appearance (teeth, lips, nose, and pro-

file of the face). This may be explained by the fact that chil-

dren 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 treat-

ment 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 some-

thing 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 out-

come 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 influence the childs perception of

the impact of surgery. Further, the education level of their

parents (only 12% had tertiary education) also may have in-

fluenced the childs feeling of satisfaction with surgical treat-ment. Parental level of education and their knowledge in un-

derstanding the disease process and the many treatment alter-

natives 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

significantly between the parents and 15-year-old subjects.

They reported that this was an important finding for cleft care

teams, because treatment planning may be based purely on the

opinions of the parents if the childs involvement in the dis-

cussion 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 tradi-

tional values), exposure of the patients to the external envi-

ronment (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 chil-

dren. 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


11/12


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 spe-

cialist clinics are located there. Furthermore, a referral centerlike 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 treat-

ment. During the study, subjects with different types of cleft

were asked questions about the same features. This may have

reduced the significance of the results for features like ap-

pearance 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 thesubgroups.

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 satisfied nonaf-

fected children are with their facial features.

Psychological sessions need to be incorporated in the treat-

ment 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 indi-

viduals with cleft lip and/or palate.

Finally, due to the difficulty 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 multidis-

ciplinary 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 be-

cause of their cleft condition, and they stated that their self-

confidence was affected by the cleft condition. The patients

and their parents both were satisfied 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 sam-

ple 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 Chil-

drens 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 manu-

script.

REFERENCES

Altman DG. Practical statistics for medical research. London: Chapman and

Hall/CRC; 1999:403407.

Bellis TH, Wolgemuth B. The incidence of cleft lip and palate deformities in

the southeast of Scotland (19711990). Br J Orthod. 1999;26:121125.

Bernstein NR, Kapp K. Adolescents with cleft palate: body-image and psycho-

social problems. Psychosomatics. 1981;22:697703.

Bradbury ET. Cleft lip and palate surgery: the need for individual and family

counseling. Br J Health Med. 1997;57:366367.

Bradbury ET, Hewinson J. Early parental adjustment to visible congenital dis-

figurement. Child Care Health Dev. 1994;20:251266.

Broder HL, Richman LC, Matheson PB. Learning disabilities, school achieve-

ment and grade retention among children with cleft: a two-center study.

Cleft Palate Craniofac J. 1998;35:127131.

Broder HL, Strauss RP. Psychological problems and referral among oral-facial

team patients. J Rehab. 1991;57:3136.

Chen M, Andersen RM. Oral Health Behavior. In: Comparing Oral Health

Care Systems: A Second International Collaborative Study. Geneva: World

Health Organization; 1997:5573.

Cunningham SJ. The psychology of facial appearance. Dent Update. 1999;26:

438443.

Di Biase AT, Markus AF. Cleft lip and palate care in the UK: the CSAG report.

Br Dent J. 1998;185:320321.Gregg T, Boyd D, Richardson A. The incidence of cleft lip and palate in North-

ern Ireland from 19801990. Br J Orthod. 1994;21:387392.

Heller A, Tidmarsh W, Pless IB. The psychosocial functioning of young adults

born with cleft lip or palate: a follow-up study. Clin Pediatr. 1981;20:459

465.

Joycelyn LJ, Penko MA, Rode HL. Cognition, communication, and hearing in

young children with cleft lip and palate and in control children: a longitu-

dinal study. Pediatrics. 1996;97:529534.

King NM, Tong MCK, Ling JYK. The ectrodactyly-ectodermal dysplasia-cleft-

ing syndrome: a literature review and case report. Quintessence Int. 1994;

25:731736.

Lansdown R, Lloyd J, Hunter J. Facial deformity in childhood: severity and

psychological adjustment. Child Care Health Dev. 1991;17:165172.

McCarthy AM, Richman LC, Hoffman RP, Rubenstein L. Psychological screen-

ing of children for participation in non-therapeutic invasive research. ArchPediatr Adolesc Med. 2001;155:11971203.

Millard T, Richman LC. Different cleft conditions, facial appearance and

speech: relationship to psychological variables. Cleft Palate Craniofac J.

2001;38:6875.

Natsume N, Kawai T. The incidence of cleft lip and palate in 39,696 Japanese

babies born in 1983. Int J Oral Maxillofac Surg. 1986;15:565586.

Natsume N, Suzuki T, Kawai T. The prevalence of cleft lip and palate in the

Japanese: their birth prevalence in 40,304 infants born during 1982. Oral

Surg Oral Med Oral Pathol. 1987;63:421423.

Natsume N, Suzuki T, Kawai T. The prevalence of cleft lip and palate in Jap-

anese. Br J Oral Maxillofac Surg. 1988;26:232236.

Noar JH. Questionnaire survey of attitudes and concerns of patients with cleft

lip and palate and their parents. Cleft Palate J. 1991;28:279284.


12/12


NOHSS. National Oral Health Survey of School Children. Malaysia: Govern-

ment Printer, Oral Health Division, Ministry of Health, Malaysia; 1998.

Paynter ET, Jordan WJ, Flinch DL. Patient compliance with cleft palate team

regimens. J Speech Hear Dis. 1990;55:740750.

Ramstad T, Ottem E, Shaw WC. Psychosocial adjustment in Norwegian adults

who had undergone standardized treatment of complete cleft lip and palate:

II. Self-reported problems and concerns with appearance. Scand J Plast

Reconstr Hand Surg.1995;29:329336.Richman LC, Harper DC. Personality profiles of physically impaired young

adults. J Clin Psychol. 1980;36:668671.

Shaw WC, Meek SC, Jones DS. Nicknames, teasing, harassment and the sa-

lience of dental features among school children. Br J Orthod. 1980;7:75

80.

Stricker, G. Psychological issues pertaining to malocclusion. Am J Orthod.

1970;58:276283.

Stricker G, Clifford E, Cohen LK, Giddon DB, Meskin LH, Evans CA. Psy-

chosocial aspects of craniofacial disfigurement. Am J Orthod. 1979;76:410

422.

Thompson A, Kent G. Adjusting to disfigurement: process involved in dealing

with being visibly different. Clin Psychol Rev. 2001;21:663682.

Tobiasen JM, Speltz ML. Cleft palate: A psychosocial developmental perspec-

tive. In: Berkowitz, S. (eds). Cleft Lip and Palate. Perspectives in Manage-

ment Volume II: An Introduction to Craniofacial Anomalies. San Diego:

Singular Publishing; 1996:1523.

Turner SR, Rumsey N, Sandy JR. Psychological aspects of cleft lip and palate.Eur J Orthod. 1998;20:407415.

Turner SR, Thomas PWN, Rumsey N, Sandy JR. Psychological outcomes

amongst cleft patients and their families. Br J Plast Surg. 1997;50:19.

Williams AC, Sandy JR, Thomas S, Sell D, Sterne JAC. Influence of surgeons

experience on speech outcome in cleft lip and palate. Lancet. 1999;354:

1967.

Williams JL, Markus AF. Cleft care: life after CSAG. Br J Oral Maxillofac

Surg. 1998;36:8183.

assessment of patients' level of satisfaction with cleft treatment using the cleft evaluation...

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