The Eurocleft Study: Intercenter Study of Treatment Outcome in Patients

With Complete Cleft Lip and Palate. Part 4: Relationship Among Treatment
Outcome, Patient/Parent Satisfaction, and the Burden of Care
GUNVOR SEMB, D.D.S., PH.D.
VIVECA BRATTSTROM, D.D.S, PH.D.
KIRSTEN MLSTED, D.D.S., PH.D.
BIRTE PRAHL-ANDERSEN, D.D.S., PH.D.
PETRA ZUURBIER, D.D.S.
NICHOLA RUMSEY, B.A.(HONS), M.SC., PH.D.
WILLIAM C. SHAW, B.D.S., PH.D.

Objective: To assess patient/parent satisfaction with the treatment they had

received from their respective teams, and to explore interrelationships be-
tween satisfaction, objectively rated outcome, and the burden of care.
Design: This study reports cross-sectional data as part of the overall longi-
tudinal cohort study reported in the other four papers of this series.
Setting: Multidisciplinary cleft services in Northern Europe.
Subjects: 127 consecutively treated 17-year-olds with repaired complete uni-
lateral cleft lip and palate and their parents.
Main Outcome Measure: Patient/parent satisfaction.
Results: Generally, there was a high level of patient/parent satisfaction.
There were no relationships among satisfaction, objectively rated outcomes,
and the amount of care.
Conclusions: This study highlights various challenges involved in question-
naire surveys into patient/parent satisfaction, and underlines the need for col-
lective efforts to improve our understanding of this issue.

KEY WORDS: complete unilateral cleft lip and palate, patient/parent satisfaction

The opinion of patients is increasingly being taken into
account when assessing the outcome of care received from
health services. Donabedian (1996) stated that patient satis-
faction should be the ultimate validater of the quality of
care. However, this aspect of cleft care has received atten-
tion in only a minority of outcome studies to date (e.g., Clif-
ford et al., 1972; Lefebvre and Munro, 1978; Strauss et al.,
1988; Noar, 1991; Broder et al., 1992; Turner et al., 1997;
Jeffery and Boorman, 2001; Williams et al., 2001). Further-
more, there are recognized difficulties in assessing satisfac-
TABLE 1 Number of Returned Questionnaires From Patients

Returned Girls Boys Unspec-

Sent Girls Boys (%) (%) (%) ified
Dr. Semb is affiliated with the Oslo Cleft Team, Department of Plastic Sur-
gery, National Hospital, and Bredtvet Resource Centre, and is Adjunct Profes- Center A 26 9 17 23 (89) 8 (89) 15 (88)
sor, Dental Faculty, University of Oslo, Oslo, Norway, as well as Senior Lec- Center B 26 10 16 16 (62) 7 (70) 9 (56)
turer in Craniofacial Anomalies, Department of Oral Health and Development, Center D 25 9 16 14 (56) 7 (78) 6 (38) 1
University Dental Hospital of Manchester, Manchester, United Kingdom. Dr. Center E 30 11 19 22 (73) 8 (73) 13 (68) 1
Center F 20 12 8 18 (90) 11 (92) 7 (87)
Brattstrom is Assistant Professor and Head of the Orthodontic Department,
Total 127 51 76 93 (73) 41 (80) 50 (66) 2
Eastman Institute, Stockholm, Sweden. Dr. Mlsted is Associate Professor and
Head of the Cleft Palate Department, Copenhagen, Denmark. Dr. Prahl-Ander-
sen is Professor and Head of the Orthodontic Department, Academic Centre
for Dentistry, Amsterdam, The Netherlands. Dr. Zuurbier is an Orthodontist, TABLE 2 Number of Returned Questionnaires From Parents
Orthodontic Department, Academic Centre for Dentistry, Amsterdam, The
Netherlands. Nichola Rumsey is Professor of Appearance and Health Psychol- Both
Returned Mothers Fathers Parents Unspeci-
ogy, Centre for Appearance Research, University of the West of England Sent (%) (%) (%) (%) fied
(UWE), Bristol, United Kingdom. Dr. Shaw is Professor at the Department for
Oral Health and Development, University Dental Hospital of Manchester, Man- Center A 26 21 (81) 15 (58) 1 (5) 5 (19)
chester, United Kingdom. Center B 26 14 (54) 11 (42) 0 3 (12)
Submitted September 2002; Accepted December 2003. Center D 25 11 (44) 9 (36) 2 (8) 0 1
Center E 30 17 (57) 6 (20) 8 (27) 3 (10)
Address correspondence to: Gunvor Semb, University Dental Hospital of
Center F 20 18 (90) 11 (37) 4 (20) 3 (15)
Manchester, Higher Cambridge Street, Manchester M15 6FH, United Kingdom. Total 127 81 (65) 52 (41) 15 (12) 14 (11) 1
E-mail gunvor.semb@man.ac.uk.

83
 84

TABLE 3 Response to I Would Have Liked to Get More Information From the Specialists. The Responses I Agree and I Strongly Agree Were Combined

Patients Parents
I Agree/I Strongly Agree I Agree/I Strongly Agree
A B D E F All A B D E F All
Center n % n % n % n % n % n % n % n % n % n % n % n %

Hearing/ENT 4 21 0 0 8 80 2 11 7 70 21 31 2 11 1 9 5 50 7 44 7 54 22 32
Orthodontics 2 9 3 21 7 54 1 5 6 33 19 21 3 15 0 0 7 58 3 19 7 41 20 25
Speech therapy 1 8 1 13 5 63 2 12 6 38 15 24 3 23 1 9 4 57 5 31 8 50 21 33
Surgery 5 25 6 50 9 82 4 19 10 63 34 43 5 26 5 42 6 60 6 38 8 44 30 40
Total dissatisfaction 12 16 10 23 29 69 9 11 29 48 89 30 13 19 7 15 22 56 21 33 30 47 93 33
Cleft PalateCraniofacial Journal, January 2005, Vol. 42 No. 1

TABLE 4 Response to When I Discussed My Views and Wishes With the Specialists, I Felt That They Listened to Me Carefully and Took My Opinions Into Consideration. The
Responses I Disagree and I Strongly Disagree Were Combined

Patients Parents
I Disagree/I Strongly Disagree I Disagree/I Strongly Disagree
A B D E F All A B D E F All
Center n % n % n % n % n % n % n % n % n % n % n % n %

Hearing/ENT 0 0 1 11 2 18 1 5 1 11 5 8 2 12 1 9 1 13 3 19 1 8 8 13
Orthodontics 0 0 2 13 1 7 0 0 3 17 6 6 2 10 0 0 1 10 0 0 2 11 5 6
Speech therapy 1 8 1 13 1 11 0 0 3 19 6 10 2 14 0 0 0 0 2 13 3 18 7 11
Surgery 1 5 5 42 1 8 4 19 2 13 13 16 2 10 3 27 1 13 2 12 1 6 9 12
Total dissatisfaction 2 3 9 20 5 11 5 6 9 16 30 10 8 11 4 9 3 10 7 11 7 11 29 10
 Semb et al., OUTCOMES, SATISFACTION, AND BURDEN OF CARE 85

TABLE 5 Patients and Parents Opinions of the Various Aspects of Treatment Outcome in Response to How Do You Evaluate the
Results of Your (Your Childs) Treatment? The Responses Poor and Very Poor Were Combined

Patients Parents
Girls Boys All Mothers Fathers Both All
Poor/ Poor/ Poor/ Poor/ Poor/ Poor/ Poor/
Very Poor Very Poor Very Poor Very Poor Very Poor Very Poor Very Poor
n % n % n % n % n % n % n %

Speech 1 3 3 6 4 5 2 4 1 7 0 0 3 4
Bite/chewing 2 5 3 6 5 6 5 11 1 7 3 23 9 12
Facial appearance 2 6 4 9 6 8 2 4 3 20 2 15 7 9
Appearance of teeth 2 5 5 10 7 8 4 8 1 7 1 7 6 8
Hearing 3 9 9 21 12 15 7 16 3 23 1 8 11 15
Profile 5 14 10 22 15 19 12 25 1 8 4 31 17 23
Appearance of lip 7 19 13 30 20 25 13 28 6 43 6 46 25 34
Appearance of nose 10 29 21 48 31 40 16 35 6 43 8 67 30 42
Overall dissatisfaction 32 11 68 19 100 15 61 16 22 20 25 24 108 18

tion with respect to definitions, measurements (reliability and
validity), ceiling effects, and cultural differences (Bowling,
1997). Despite such difficulties, the centers participating in
this cohort study considered an exploration of this important
but challenging issue to be worthwhile.
AIMS
The aim of this part of the study was to assess the satisfac-
tion of patients and parents with the treatment they had re-
ceived from their respective teams, and to explore interrela-
tionships between satisfaction, objectively rated outcome, and
the burden of care. The studys main purpose was a quality
improvement initiative, with the intention of providing infor-
mation to the individual teams about possible revisions of their
services that might improve patient and parent satisfaction. In-
depth psychological analysis was not attempted.
For the purposes of this investigation satisfaction in-
cludes patients and parents views on
the manner in which their care had been provided;
the outcomes achieved; and
possible deficits in services that could be improved in the
future.
SUBJECTS AND METHODS
The subjects of the investigation were 127 consecutively
treated 17-year-olds with repaired complete unilateral cleft lip
and palate (UCLP) from five North-European cleft centers, as
described in the first paper of this series (Semb et al., 2004),
and their parents.
A structured, self-administered questionnaire was designed,
one for the 17-year-old patients, and a similar one for their
parents. It was piloted on 10 patients with UCLP outside the
study cohort. The questionnaires can be obtained from the au-
thors. The first three questions were concerned with accessi-
bility to the team and the way the patient/parent perceived the
effort made to attend the many evaluation and treatment ses-
sions. This has been reported in the first paper of this series
(Semb et al., 2004). The next 17 questions were related to the
manner in which care was delivered by four of the cleft team
professionals: surgeons, ear-nose-throat (ENT) specialists, or-
thodontists, and speech and language therapists. The questions
were presented in the form of statements or in yes/no ques-
tions. A four-point scale from I strongly agree to I strongly
disagree or excellent to very poor was used for the
statements. The questionnaire then included five questions de-
signed to evaluate what the patients/parents thought about the
different treatment results, and if they would want more treat-
ment.
Although concerned more with adjustment than satisfaction,
five questions were asked about teasing and whether any in-
terventions had helped to reduce the teasing.
The last two questions asked for an overall evaluation of
the care that had been provided over the years by the different
specialists, and if there were aspects of care that should be
improved.
The questionnaires were first sent to the home address of
all patients aged 17 years. The purpose of the study was ex-
plained in a cover letter, and it was emphasized that the study
was anonymous. Three weeks later, the parent questionnaires
were sent out, in the hope that the respondents would be less
likely to confer than if they were responding simultaneously.
A telephone follow-up for all subjects was carried out 3
months later.
Statistics
In view of the ordinal nature of the data, the large number
of possible comparisons that might have been conducted, and
the associated risk of Type II errors, comparisons that might
reflect important underlying differences between groups and
subgroups were tested using the chi-square and related tests
for k independent samples; p value was set at .01.
The questionnaire was designed to include a mix of posi-
tively and negatively worded statements. Each statement, in
86 Cleft PalateCraniofacial Journal, January 2005, Vol. 42 No. 1

turn, could be rated positively or negatively. To simplify pre-

Very Poor

4
12
9
8
15
24
35
42
19
%
Poor/
sentation and readability, the sum of the negative responses is
All listed in all tables. (Positive responses can be calculated by

3
9
7
6
11
18
26
31
111
n
subtracting from 100%, the negative responses.)
TABLE 6 Patients and Parents Opinions on Different Traits of Treatment Results by Center in Response to How Do You Evaluate the Results of Your (Your Childs)

Very Poor
In order to simplify, the statements I strongly agree and

6
21
0
6
15
44
29
44
20
%
Poor/

I agree were combined, as were I strongly disagree and

F

1 I disagree. The statistical analysis, however, was performed

3
0
1
2
7
4
7
25
n

on the four individual values.

Very Poor

0
6
24
0
29
0
35
31
16
%
Poor/

RESULTS
E

0
1
4
0
5
0
6
5
21
n
Parents

In total, 93 (73%) of the patients questionnaires (Table 1)

and 82 (65%) of the parents questionnaires (Table 2) were
Very Poor

0
10
0
11
20
33
30
56
19
%

returned. Two of the patients had not indicated their gender,

Poor/
D

and 14 (11%) of the parents had filled in the questionnaire

0
1
0
1
2
3
3
5
15
n

together. A complete overview of the respondents is given in

Tables 1 and 2.
Very Poor

0
0
8
0
0
21
23
31
10
%

The statements of the ENT section and the speech and lan-
Poor/
B

guage therapy section were not fully completed by all respon-

0
0
1
0
0
3
3
4
11
n

dents. Percentages listed here were adjusted to reflect only the

percentage of actual responses.
Very Poor

10
20
11
20
10
25
50
53
25

As the large numbers of analyses preclude full reporting,

%
Poor/

the tables presented have been selected to represent the results

A

2
4
2
4
2
5
10
10
39

concerning the manner in which care was perceived. Gender

n

differences are only commented upon when these reached sta-

Very Poor

tistical significance.
5
7
9
9
15
20
25
40
16
%
Poor/
All

4
6
7
8
12
16
21
32
106

Patient/Parent Satisfaction
n

Adequacy of Information
Very Poor

6
16
0
0
8
13
6
31
9
%
Poor/
F

Table 3 presents for patients and parents the percentage who

1
1
0
0
1
2
1
5
11
n

would have liked more information about their treatment from

respective specialists. The differences between ratings for the
Very Poor

0
5
6
5
26
20
37
32
16
%
Treatment? The Responses Poor and Very Poor Were Combined

Poor/

various disciplines were not statistically significant.

E

A significant difference in patient dissatisfaction with the

0
1
1
1
5
4
7
6
25
n
Patients

information given was found between centers, patient dissat-

isfaction with this aspect of care being greater for Centers D
Very Poor

8
14
27
38
8
27
17
45
23
%

and F than for Centers A, B, and E (p , .001). Parents in

Poor/
D

Center D and F were more dissatisfied than were those in

1
2
3
5
1
3
2
5
22
n

Centers A and B (p , .001).

Very Poor

0
13
7
6
7
14
14
15
10
%
Poor/

Best Way to Provide Information

B

0
2
1
1
1
2
2
2
11
n

The parents also were asked what, in their opinion, is the

best way to be given information about the treatment. The
Very Poor

9
0
9
4
18
24
41
67
21
%

options were: a) a private talk with the specialist who starts

Poor/
A

a new phase of treatment, b) a meeting where all the specialists

2
0
2
1
4
5
9
14
37
n

are together, c) written information, and d) other, please state.

Parents could choose more than one option. The great majority
of parents (73%) reported that they would like to get the in-
Overall dissatisfaction
Appearance of teeth

Appearance of nose

formation orally from the specialist who was initiating a treat-

Appearance of lip
Facial appearance

ment. Twenty-five percent wanted to get the information in a

Bite/chewing

group meeting where all specialists were present, and only 1%

Hearing
Speech

Profile

thought the best way of providing information was in writing.

One parent wanted written information before the visit to the
 Semb et al., OUTCOMES, SATISFACTION, AND BURDEN OF CARE 87

TABLE 7 Patients and Parents Response to Have You (Has Your Child) Ever Been Teased About the Repaired Cleft by Other
Children? Response Categories: Yes and No. If Yes, What Was the Teasing About? (Tick All the Answers That Apply)

Patients Parents
Girls Boys All Mothers Fathers Both All
n % n % n % n % n % n % n %

Been teased 31 76 36 72 67 74 36 69 9 60 8 57 53 65
Features teased about
Facial appearance 11 27 18 36 29 32 20 38 4 27 3 21 27 33
Speech 11 27 13 26 24 26 10 19 3 20 2 14 15 19
Hearing 1 2 2 4 3 3 4 8 1 7 0 0 5 6
Appearance of teeth 7 17 6 12 13 14 2 4 1 7 0 0 3 4
Bite/chewing 1 2 0 0 1 1 0 0 0 0 0 0 0 0
Profile 7 17 7 14 14 15 4 8 1 7 1 7 6 7
Appearance of lip 22 54 23 46 45 49 21 40 5 33 2 14 28 35
Appearance of nose 23 56 28 56 51 56 25 48 5 33 6 43 36 44
Age when teased
47 years 3 7 5 10 8 9 10 19 1 7 3 21 14 17
811 years 28 68 26 52 54 59 28 54 7 47 4 29 39 48
1215 years 14 34 20 40 34 37 18 35 5 33 4 29 27 33
1619 years 4 10 1 2 5 5 0 0 0 0 2 14 2 2

clinic. Thirty-one percent of parents wanted written informa-
tion in addition to their preferred face-to-face way of getting
information.
Responsiveness
Generally, patients and parents who felt that their views
were not listened to were in a small minority (Table 4). There
were no statistically significant differences in comparisons be-
tween disciplines or centers. Girls, however, were more dis-
satisfied than the boys with the way in which the specialists
had listened to them (p 5 .01).
There was a generally favorable response to related ques-
tions concerning whether patients and parents felt they had
been treated with respect, and whether they had confidence in
the specialists.
Satisfaction With Treatment
Satisfaction with individual aspects of treatment outcome:
Despite the often disappointing objective ratings of outcome
reported in Papers 2 and 3 (Brattstrom et al., 2004; Mlsted
et al., 2004), overall, few patients and parents were dissatisfied
with the results of the treatment. Table 5 shows the respon-
dents opinion of their treatment results in relation to various
outcomes.
The patients were most dissatisfied with the appearance of
the nose, lip, and facial profile. These levels of dissatisfaction
with appearance outcomes were higher at a statistically sig-
nificant level than the dissatisfaction expressed about speech
(p , .005). The boys were more dissatisfied than the girls (p
5 .007).
Parents mainly agreed with the teenagers; they were more
dissatisfied with their offsprings nasal appearance, the ap-
pearance of the lip and the facial profile than with speech (p
, .001).
There were no statistically significant differences between
the patients and parents response across the five centers (Ta-
ble 6).
Desire for further treatment: Even though a high percentage
of both patients and parents said they were generally satisfied
with most outcomes, 65% of the patients and parents wanted
more treatment. Lip and nose corrections were most frequently
required, relating perhaps to higher levels of dissatisfaction
with these outcomes (Table 5). There were no statistically sig-
nificant differences among centers in the patients wish to have
more treatment. However, the parents from Center A expressed
a significantly greater desire to have more treatment than par-
ents from Centers D and E (p , .010 and p , .001, respec-
tively).
Satisfaction with different specialists: There were no statis-
tically significant differences among the disciplines or the cen-
ters in relation to ratings of satisfaction with overall care.
Reported Teasing
The results from the responses to questions about teasing
are presented in Tables 7 and 8. Seventy-four percent of the
patients reported having been teased. By far, the most common
features to be the focus of teasing were appearance of the nose
and the lip. When compared with teasing about speech, ap-
pearance of teeth, and facial appearance, the differences were
statistically significant (p , .001).
Sixty-five percent of the parents reported that their offspring
had been teased, and they confirmed that the teasing had been
mostly about nose and lip rather than about hearing, appear-
ance of teeth, and speech for all comparisons (p , .001).
The ages between 8 and 11 years were the period during
88 Cleft PalateCraniofacial Journal, January 2005, Vol. 42 No. 1

which the patients reported most teasing (59%), followed by

TABLE 8 Incidence of Teasing and Age at Which Teasing Occurred in the Five Centers. Patients and Parents Response to Have You (Has Your Child) Ever Been Teased About

65

33
19
6
4
0
7
35
44

17
48
33
2
%
37% between 12 and 15 years. Far fewer patients reported
All

teasing in early childhood (9%) and late adolescence (5%).

53

27
15
5
3
0
6
28
36

14
39
27
2
n

The amount of teasing reported between 8 and 11 years was

significantly greater than the other three age periods (p ,
61

28
6
6
0
0
6
28
44

11
39
22
0
%

.003).
F

The only statistically significant difference between level of

11

5
1
1
0
0
1
5
8

2
7
4
0
n

teasing reported in the different centers was the higher amount

of teasing at the age of 4 to 7 years reported by the parents in
47

29
18
6
6
0
0
35
35

0
35
24
0
%

Center D than in Center E (p , .001).

the Repaired Cleft by Other Children? Response Categories: Yes and No. If Yes, What Was the Teasing About? (Tick All the Answers That Apply)

5
3
1
1
0
0
6
6

0
6
4
0
n
Parents

Overall Dissatisfaction and Manner in Which Care was

Given
92

58
25
8
0
0
25
67
67

50
75
58
0
%
D

In order to explore any pattern between overall dissatisfac-

11

7
3
1
0
0
3
8
8

6
9
7
0
n

tion and manner in which care was given, centers were ranked
according to patient/parent ratings for overall dissatisfaction
64

36
14
0
0
0
7
7
57

7
43
21
7
%

(Table 9). No patterns of rankings between overall dissatisfac-

B

tion with information provision and responsiveness to patient

9

5
2
0
0
0
1
1
8

1
6
3
1
n

views were evident, however.

Dissatisfaction and Treatment Outcomes

71

29
29
10
10
0
5
43
33

24
52
48
5
%
A

In order to explore any pattern between patient/parent dis-

15

6
6
2
2
0
1
9
7

5
11
10
1
n

satisfaction and outcome the centers were ranked according to

the objective panel ratings described in Papers 2 and 3 in the
74

32
26
3
14
1
15
49
56

9
59
37
5
%

present series (Brattstrom et al., 2004; Mlsted et al., 2004).

All

As Table 10 indicates, there seems to be no clear ranking pat-

67

29
24
3
13
1
14
45
51

8
54
34
5
n

terns between the objectively measured outcome and patient/

parent dissatisfaction.
72

17
17
0
0
0
6
44
50

0
72
17
0
%

The same holds true with regard to the appearance of the

F

lip. There seems to be no clear link between the objectively

13

3
3
0
0
0
1
8
9

0
12
3
0
n

measured outcome and patient/parent dissatisfaction (Table

11).
68

41
27
0
23
0
23
50
59

14
50
45
5
%

With regard to dentofacial relationship, a statistically sig-

E

nificant difference among Centers D and F and Centers A, B,

15

8
6
0
5
0
5
10
13

2
11
10
1
n
Patients

and E was noted in Paper 3 of the present series. Table 12

shows that the worst center did have the most dissatisfied
86

36
29
7
29
0
21
71
64

21
71
57
14
%

patients compared with Centers F and A (p , .001). In the

D

center ranked fourth, none of the patients were dissatisfied, and

12

5
4
1
4
0
3
10
9

3
10
8
2
n

the center ranked second best, Center A, had the most dissat-
isfied parents.
69

44
31
0
19
0
25
31
63

13
56
25
6
%
B

Dissatisfaction and Amount of Treatment

11

7
4
0
3
0
4
5
10

2
9
3
1
n

In Tables 13 and 14, an attempt has been made to relate

74

26
30
9
4
4
4
52
43

4
52
43
4
%

patient and parent dissatisfaction to the amount of treatment

A

received.
17

6
7
2
1
1
1
12
10

1
12
10
1
n

The centers were ranked according to patient/parent dissat-

isfaction with nose and lip appearance, along with the corre-
sponding amount of treatment described in Paper 1 of the pre-
Appearance of teeth

Appearance of nose
Features teased about

sent series (Semb et al., 2004). No links are evident.

Appearance of lip
Facial appearance

Age when teased

Bite/chewing

811 years
1215 years
1619 years

Dissatisfaction and Amount of Teasing

47 years
Been teased

Hearing
Speech

Profile

In a final attempt to explore factors that may have an influ-

ence upon patient satisfaction, centers were ranked according
 Semb et al., OUTCOMES, SATISFACTION, AND BURDEN OF CARE 89

TABLE 9 The Relationship Between Overall Dissatisfaction and Perceptions of Care Using the Statements I Would Have Liked to Get
More Information From the Specialists and Statement When I Discussed My Views and Wishes With the Specialists, I Felt That They
Listened to Me and Took My Opinions Into Consideration. The Responses to the First I Agree and I Strongly Agree Were
Combined. The Responses to the Second I Disagree and I Strongly Disagree Were Combined

Patients Parents
Statement: The Statement: The
Specialists Listened Specialists Listened
Statement: I Would Carefully to Me and Statement: I Would Carefully to Me and
Have Liked to Get Took My Opinion into Have Liked to Get Took My Opinion into
Ranking of Centers by More Information Consideration Ranking of Centers by More Information Consideration
Level of Dissatisfaction I Agree/ I Disagree/ Level of Dissatisfaction I Agree/ I Disagree/
With Overall Care I Strongly Agree I Strongly Disagree With Overall Care I Strongly Agree I Strongly Disagree
n % n % n % n % n % n %

Lowest level of dissatisfaction Lowest level of dissatisfaction

D 49 (98) 29 (69) 5 (11) D 30 (97) 27 (56) 3 (10)
F 53 (95) 29 (48) 9 (16) B 47 (98) 7 (15) 4 (9)
A 72 (94) 12 (16) 2 (3) E 62 (93) 21 (33) 7 (11)
E 68 (93) 9 (11) 5 (6) A 65 (90) 13 (19) 8 (11)
B 42 (91) 10 (23) 9 (20) F 55 (83) 30 (47) 7 (11)
Highest level of Highest level of
dissatisfaction dissatisfaction

to dissatisfaction, along with reported levels across ages of
teasing about the nose and lip (Table 15). Once again, however,
no clear associations were evident.
DISCUSSION
Methodology
In the absence of an agreed-upon international standard for
the appraisal of satisfaction, we reviewed published studies
and consulted with a number of experienced psychologists be-
fore piloting the questionnaire on 10 patients outside the co-
hort. The approach taken is similar to other published studies
in the English language (Noar, 1991; Turner et al., 1997; Wil-
liams et al., 2001) and represents a pragmatic approach to the
complexities of achieving a consensus of respected profes-
sionals and nationals involved in the study.
In the absence of a suitable existing measure or the resourc-
es to develop a measure with robust psychometric properties,
the internal and external validity and reliability of our ques-
tionnaire remains suspect. However, the experience gained and
the database arising from this and a related project (Williams
et al., 2001) will serve as a useful starting point for future
collaboration working in the Eurocran project, an initiative
funded by the European Union (www.Eurocran.org).
The following issues remain among the challenges for future
efforts:
Response bias: When patients receive a questionnaire from
the team that provided all their care, it would not be surprising
for them to respond with polite gratitude. We considered is-
suing questionnaires through an impartial agency, but were
unable to think of a system that would operate above the na-
tional level for the five countries involved and would satisfy
national ethical requirements.
Response rate: The response rate was especially low for
three centers, which raises the obvious possibility that the least
satisfied individuals did not reply at all. (The clinical outcomes
from these centers ranged from best to worst.) Low response
rate is likely to be a problem in future postal questionnaires,
because it is not possible to offer anonymity in a system that
follows up nonrespondents.
The advantages of questionnaires over interviews include
consistency in asking questions, low cost, and administrative
simplicity. However, patients and parents undoubtedly have a

TABLE 10 Dissatisfaction With the Appearance of the Nose in
Relation to Outcome as Judged by Photographs. The Responses
to How Do You Evaluate the Results of Your (Your Childs)
Treatment, the Appearance of the Nose? The Responses Poor
and Very Poor Were Combined
TABLE 11 Dissatisfaction With Lip Appearance in Relation to
Treatment Outcome as Judged by Photographs. The Responses
to How Do You Evaluate the Results of Your (Your Childs)
Treatment, the Appearance of the Lip? The Responses Poor
and Very Poor Were Combined

Patients Parents Patients Parents

Ranking of Centers: Poor / Poor / Ranking of Centers: Poor / Poor /
Best to Worst, Very Poor Very Poor Best to Worst, Very Poor Very Poor
in Mean Score for in Mean Score for
Appearance of Nose n % n % Appearance of Lip n % n %

Best A 3.3 14 (67) 10 (53) Best B 3.0 2 (14) 3 (23)

E 3.3 6 (32) 5 (31) A 3.2 9 (41) 10 (50)
B 3.4 2 (15) 4 (31) F 3.4 1 (6) 4 (29)
D 3.4 5 (45) 5 (56) E 3.5 7 (37) 6 (35)
Worst F 3.9 5 (31) 7 (44) Worst D 3.5 2 (17) 3 (30)
90 Cleft PalateCraniofacial Journal, January 2005, Vol. 42 No. 1

TABLE 12 Dissatisfaction With the Dental Appearance in volvement in a treatment process may indicate satisfaction to
Relation to Dentofacial Outcome as Judged on Study Models.
The Responses How Do You Evaluate the Results of Your
justify their investment. Although treatment in this study was
(Your Childs) Treatment, the Appearance of the Teeth? The provided at no cost in the participating centers, it had occupied
Responses Poor and Very Poor Were Combined a large part of the respondents time and life experience during
a 17-year period. Despite the general satisfaction expressed,
Ranking of Centers: Patients Parents
Best to Worst, Poor / Poor / 65% of patients and parents stated that they would like to have
Mean Score for Very Poor Very Poor more treatment.
Dental Arch
Relationship n % n % For individual teams and the disciplines within them there
are pointers to areas where there appear to be shortcomings in
Best E 1.7 1 (5) 0 (0)
A 1.9 1 (4) 4 (20) communication.
B 2.2 1 (6) 0 (0)
F 3.3 0 (0) 1 (6)
Worst D 3.4 5 (38) 1 (11) Factors Influencing Satisfaction

In our efforts to explain factors that influence satisfaction,

complex set of important and relevant beliefs that are not eas-
ily captured in a simple expression of satisfaction (Williams,
1994). Interviewing, on the other hand, permits a wider and
fuller expression of feelings, but it is administratively much
more demanding and more difficult to codify and analyze in
relation to cross-center and discipline differences.
Mixing positively and negatively worded questions as we
did is considered desirable (Bowling, 1997), but for some in-
dividuals, this may have been confusing.
Cultural consistency: Apart from the practical difficulties of
translating questions and meanings, all of the questions in-
cluded in the measure may have had differential nuances re-
lated to national culture, despite the research groups efforts to
reach consensus on relevant and uncomplicated questions. We
could speculate that a characteristic such as complaining or
gratefulness has a systematic national bias, but we have no
way of telling whether or not such stereotypes exist.
Lessons for Teams and Disciplines
We do not feel reassured by the general levels of satisfaction
with care and outcome expressed by our respondents. Clifford
(1969) noted that across a range of plastic surgery literature,
regardless of the surgical procedure, the surgeon, and the
geographical area, more than 80 percent of the patients were
satisfied. In addition to the response bias mentioned above
he suggested that patients with a financial and emotional in-
we have to conclude that this has no apparent association with
success of treatment (as judged objectively), the amount of
treatment, or the experience of being teased. Nor was overall
satisfaction with the care given related to reported satisfaction
with the perceived quality of teams communication (Table 9).
Thompson and Sunol (1995) rightly took a wider view.
From a meta-analysis of 221 studies of patient satisfaction,
they found that the overall satisfaction of the patient was in-
fluenced by the humaneness of the professional, technical com-
petence of the professional, outcome of the treatment, physical
facilities, continuity of the care, access, amount of information
given by the professionals, cost, bureaucracy/organization, and
the attention to psychosocial problems of patients. Carey and
Seibert (1993) found that four dimensions explained 59% of
the variance of response: care, courtesy, comfort/cleanliness,
and physician care. The same aspects of care were predictor
variables of the overall evaluation of treatment, including re-
spectful treatment by the specialist, having confidence in the
specialist, and whether the specialists introduced themselves.
Despite a lack of association with satisfaction as measured
in this study and an issue related more to adjustment, teasing
is undoubtedly a common experience about which teams in
future might take a more proactive approach. The age at which
the children had been teased was similar for all centers. One
exception was a higher amount of teasing during early child-
hood years reported by patients and parents in Center D (21%
and 50% respectively) All in all, most of the teasing had

TABLE 13 Dissatisfaction With Appearance of Nose in Relation to Nose Corrections and Presurgical Orthopedics (PSO). The Responses
to How Do You Evaluate the Results of Your (Your Childs) Treatment, the Appearance of the Nose? The Responses Poor and
Very Poor Were Combined

Patients Parents
Ranking of Dissatisfaction Ranking of Dissatisfaction
With Appearance No. of Nose With Appearance No. of Nose
of Nose Corrections Days in of Nose Corrections Days in
Months Hospital Months Hospital
n % n % of PSO for PSO n % n % of PSO for PSO

B 2 (15) 13 (27) 0 0 B 4 (31) 13 (27) 0 0

F 5 (31) 6 (15) 5 146 E 5 (31) 9 (30) 0 0
E 6 (32) 9 (30) 0 0 F 7 (44) 6 (15) 5 146
D 5 (45) 6 * 15 60 A 10 (53) 11 (65) 13 0
A 14 (67) 11 (65) 13 0 D 5 (56) 6 * 15 60
* Reliable data not available.
 Semb et al., OUTCOMES, SATISFACTION, AND BURDEN OF CARE 91

TABLE 14 Dissatisfaction With Appearance of Lip in Relation to Lip Revisions and Presurgical Orthopedics (PSO). The Responses to
How Do You Evaluate the Results of Your (Your Childs) Treatment, the Appearance of the Lip? The Responses Poor and Very
Poor Were Combined

Patients Parents
Ranking of Dissatisfaction Ranking of Dissatisfaction
With Appearance No. of Lip With Appearance No. of Lip
of Lip Revisions Days in of Lip Revisions Days in
Months Hospital Months Hospital
n % n % of PSO for PSO n % n % of PSO for PSO

F 1 (6) 9 (63) 5 146 B 3 (23) 1 (4) 0 0

B 2 (14) 1 (4) 0 0 F 4 (29) 9 (65) 5 146
D 2 (17) 10 * 15 60 D 3 (30) 10 * 15 60
E 7 (37) 18 (63) 0 0 E 6 (35) 18 (63) 0 0
A 9 (41) 14 (69) 13 0 A 10 (50) 14 (69) 13 0
* Reliable data not available.

TABLE 15 Dissatisfaction with Appearance of Nose and Lip in Relation to Nose Corrections. The Responses to How Do You Evaluate
the Results of Your (Your Childs) Treatment, the Appearance of the Nose and the Lip? The Responses Poor and Very Poor
Were Combined

Patients Parents
Amount of Amount of Amount of Amount of
Ranking of Dissatisfaction Teasing Ranking of Dissatisfaction Teasing asing Ranking of Dissatisfaction Teasing
with Appearance of Nose About Nose with Appearance of Lip About Lip About Nose with Appearance of Lip About Lip
n % n % n % n % n % n % n %

B 2 (15) 10 (63) F 1 (6) 8 (44) 8 (57) B 3 (23) 1 (7)

F 5 (31) 9 (50) B 2 (14) 5 (31) 6 (35) F 4 (29) 5 (28)
E 6 (32) 13 (59) D 2 (17) 10 (71) 8 (44) D 3 (30) 8 (67)
D 5 (45) 9 (64) E 7 (37) 11 (50) 7 (33) E 6 (35) 6 (35)
A 14 (67) 10 (43) A 9 (41) 12 (52) 8 (67) A 10 (50) 9 (43)

stopped by late adolescence, though 14% of patients in Center satisfaction with treatment, but also psychosocial adjustment
D reported that teasing still was happening at the time of study. and quality of life.

CONCLUSIONS
This attempt to measure and understand consumer satisfac-
tion with cleft care has raised many more questions than it has
answered. There are perhaps doubts that the method we adopt-
ed, a questionnaire survey, can obtain an adequate assessment
of satisfaction. This construct may be more complex than can
be captured by a relatively superficial approach. Given that
reported satisfaction is likely to be of the order of 80 percent
of responders, the continuing use of questionnaires of the type
used here could be seen as, at best, a token effort in holistic
appraisal and, at worst, a predictable self-serving exercise. On
the other hand, evaluating satisfaction must be a fundamental
goal of any team with genuine concern for the well-being of
people in their care. Our challenge is to improve these efforts
through the development of more robust and revealing instru-
ments that can be meaningfully used in future international
comparisons.
The findings certainly confirm that measurements of esthetic
and functional outcomes in isolation are not good predictors
of satisfaction with treatment. In order to understand the im-
pact of treatment, future studies must engage the complexities
of measuring patient-centered outcomes, including not only
Acknowledgments. The authors wish to acknowledge the assistance of Dr. Ei-
leen Bradbury in designing the questionnaires, and that of Mr. Philip Eyres for
statistical and clerical support. The preparation of the report was supported in
part by the European Commission funded project EUROCRAN (Contract No.
QLG1-CT-2000-01019).
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