Scand J Plast Reconstr Hand Surg 29: 329-336, 1995
PSYCHOSOCIAL ADJUSTMENT IN NORWEGIAN ADULTS WHO HAD
UNDERGONE STANDARDISED TREATMENT OF COMPLETE
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CLEFT LIP AND PALATE
I I . Self-reported problems and concerns with appearance
Tore Ramstad,' Ernst Ottem' and William C. Shaw3
From the 'Department of Plastic Surgery, Rikshospitalet, Oslo, 'National Center for Logopedics, Oslo,
Norway, and 'University Dental Hospital of Manchester, Manchester, U K
(Submitted for publication 17 May, 1994)
Abstract. Aspects of social and psychological adjust-
ment were investigated in a sample of 233 Norwegian
adults 20-35 years old with repaired complete cleft
lip and palate (CLP); in 126 the cleft was on the left,
in 45 on the right, and in 62 it was bilateral. All
subjects received a standardised regimen of care
For personal use only.
from the Oslo cleft palate team. The study, based on
response to a questionnaire, partly copied a national
survey of social and economic life in the Norwegian
population. Adults with complete clefts were com-
pared with a large control sample of the same age.
The purpose of this paper is to describe the occur-
rence of common psychological problems among
subjects with CLP. Anxiety, depression, and pal-
pitations were reported about twice as often by sub-
jects with CLP compared with controls, and these
psychological problems were strongly associated with
concerns about appearance, dentition, speech, and
desire for further treatment. These findings suggest
that there is an impaired level of psychological
wellbeing among subgroups of subjects with clefts.
Key words: cleft lip and palate, adults, psychological
wellbeing, concerns.
The present paper is the second in a series of
two articles reporting the psychosocial func-
tioning of adults with cleft lip and palate (CLP)
systematically treated by the Oslo cleft palate
team, Norway. The main findings of the first
article were that adults with CLP seemed to
achieve educational levels comparable to or
1 slightly above those of subjects without clefts.
Subjects with CLP were, however, significantly
i more often employed in clerical work but less
1 often in sales work than individuals without
clefts. Subjects with CLP also seemed to have
, 01995 Scandinavian University P r w l S S N 0284- 4311
less stable jobs. Apart from married women
with clefts, subgroups seemed to have lower
incomes than people without clefts. Fewer
people with CLP married, and they married at
an older age than people without CLP (7).
The psychosocial functioning of subjects with
CLP of various ages has been described and
studied by several investigators ( 3 , 6 , 9 , 10,
12,13). Heller et a1 (4) and Richman (8)
have suggested that people with CLP experi-
ence psychological problems related to their
facial appearance and speech which influence
behavioural patterns. As far as we know the
occurrence of common psychological problems
in adult subjects with clefts and the association
of these problems with any concerns connected
with having a cleft has not been examined.
The purpose of this part of the study was to
compare the prevalence of self-reported psy-
chological problems and aspects of social func-
tioning among adults with clefts and control
subjects. Within the group with clefts we also
examined associations between psychological
variables and self-expressed concerns in areas
affected by the cleft, including desire for further
treatment.
PATIENTS AND METHODS
The study sample included 233 subjects with CLP,
126 were on the left, 45 on the right and 62 bilateral.
There were 168 men and 65 women, mean age 28
years. We compared them with 1324 subjects without
clefts, 645 men and 679 women, mean age 28 years.
Scand J Plast Reronsrr Hand Surg 29
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Table I. Self-reports of psychological problems a.
2
Total Sex Type of cleft
%
Men Women Left Right Bilateral
Percentage Percentage Percentage Percentage Percentage Percentage
with with with with with with
No problems No problems No problems No problems No problems No problems
Anxiety
CLP 228 45 164 40 64 48 122 46 45 47 61 41
p value <0.001 <0.001 <0.001 <0.001 <0.001 <0.001
Controls 1318 21 643 18 675 24 1318 21 1318 21 1318 21
Depression
CLP 227 34 164 34 63 32 122 34 4434 61 31
p value <0.001 <0.001 <0.01 <0.001 (0.01 <0.01
Controls 1319 18 643 11 676 24 1319 18 1319 18 1319 18
Palpitations
CLP 227 15 163 14 64 17 123 16 44 18 60 10
p value <0.001 <0.001 (0.05 <0.001 <0.01 >0.05
Controls 1319 7 643 5 676 8 1319 7 1319 7 1319 7
Stronn influence on
working capacity
CLP 118 35 85 34 3 28 69 32 21 48 28 32
p value >0.05 >0.05 >0.05 >0.05 C0.05 B0.05
Controls 376 28 145 26 231 29 376 28 376 28 376 28
 Questions about
psychological
wellbeing
The questionnaire used in the present study was
based on the questionnaire used in the Level of
Living Survey, 1980, by the Central Bureau of Stat-
istics, Norway, which included questions about the
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level of psychological wellbeing (1). Respondents
were asked whether or not during the last six months,
they often, sometimes, or never had been troubled
by anxiety (including restlessness and nervousness),
depression or palpitations (heart throbbing without
being strained), or a combination; and whether these
feelings had to a large degree, some degree or small
degree interfered with their work or led to difficulties
in their contact with other people. Anxiety, depres-
sion, and palpitations are referred to as “psycho-
logical problems” throughout. Questions related to
social behaviour were also included.
The same questions were contained in the ques-
tionnaire which was given to the sample of subjects
with repaired CLP. In addition, subjects with clefts
were asked whether or not they perceived their facial
appearance, speech, and having a fixed dental proth-
esis as problems, and whether they wished for further
surgical or dental treatment or speech therapy (an
English translation of the questionnaire is available
on request from the first author).
The methods are described in detail elsewhere (7).
For personal use only.
RESULTS
The percentages of respondents who stated that
they had been troubled by psychological prob-
lems often or sometimes during the last six
months are shown in Table I. Of 228 (five
missing responses) subjects with CLP 45%
stated that they had often or sometimes during
the last six months been troubled by anxiety
compared with only 21% of 1318 (six missing
responses) control subjects ( p < 0.001).
About twice as many subjects with CLP
reported frequent or occasional psychological
problems during the last six months. With the
exception of palpitations in subjects with bilat-
eral CLP, this was true at significant levels for
both sexes (Table I).
Table 11. Mean (SD) number of psychological problems (anxiety, depression, or palpitations)
No of respondents
Men with clefts 162
p value
Women with clefts 63
Men controls 650
p value
Women controls 673
Psychosocial adjustment ZZ 331
Subjects who reported psychological prob-
lems were asked whether these had affected
their ability to work. Though this was common
in those with clefts, the differences reached
significance only for subjects with right CLP
(Table I).
Fewer psychological problems were reported
by men without CLP than women without
clefts. Men with CLP, however, reported as
many problems as women with clefts suggesting
that men with clefts were particularly dis-
advantaged (Table 11).
Sixteen questions addressed issues of social
integration. Eight questions yielded no signifi-
cant differences between subjects with CLP and
controls. These questions were: membership of
voluntary associations; whether subjects lived
with their parents; whether subjects visited
parents, visited siblings, or visited relatives;
whether subjects had friends living elsewhere;
whether they had kept contact with friends from
early childhood or youth; and whether they
wished to move elsewhere. The remainingques-
tions which yielded significant differences were
related to work, friendship and geographic
mobility (Table 111). In the working environ-
ment fewer people with clefts reported little
contact with customers and clients than
controls. On the other hand men with CLP (but
not women with clefts) were less sure about
having any close friends but when they did,
they visited more frequently. Men with clefts
also considered that their friends interacted
with each other to a greater extent than other
respondents.
Subjects with clefts reported less geographic
mobility than controls. They were more likely
to have remained in the same area since the
Mean SD
0.91 1.04
>0.05
0.95 1.04
0.34 0.68
<0.001
0.55 0.86
Scand J Plast Reconstr Hand Surg 29
 332 T. Ramstad et al.

Table 111. Self-reports of social interaction and geographic mobility

Total Men Women
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No Percentage No Percentage No Percentage

Little contact with clients and
customers
Subjects with clefts 189 22 146 23 43 19
p value <0.001 <0.001 <0.01
Controls 984 38 572 38 412 39
Unsure of having close friends
Subjects with clefts 29 13 27 17 2 3
p value <0.001 <0.001 >0.05
Controls 55 4 39 6 16 2
Daily visits with friend
Subjects with clefts 62 30 46 31
~~ 16 26
p value <0.01 <0.05 >0.05
Controls 256 26 139 22 117 24
Having friendr that interact
with each other
Subjects with clefts 92 37 75 50 17 27
p value <0.01 <0.01 >0.05
Controls 45 1 43 243 40 208 32
Lived at same place after 16
years of age
For personal use only.

Subjects with clefts 52 28 42 22 10 15

p value <0.01 <0.05 >0.05
Controls 196 18 106 33 90 17
Lived at 4 or more places
after I 6 years of age
Subjects with clefts 41 27 33 32 8 16
p value <0.05 >0.05 <0.01
Controls 310 36 134 36 176 36

age of 16. Men with clefts'were more likely to
do so than women (Table 111).
Over a quarter of subjects, regardless of gen-
der or cleft subtype, reported concerns about
their facial appearance. Significant differences
between cleft types who reported concerns with
facial appearance and those who did not express
such concerns were evident on several questions
(Table IV). Two hundred and twenty-six sub-
jects responded to both the question about
appearance concerns and that about speech
concerns. Of the 63 subjects with appearance
concerns 40% stated that they also regarded
their speech as a problem. On the other hand,
in the group of 163 subjects with no concerns
about their appearance only 15% reported
concerns about their speech. The difference
Scand J Plast Reconrtr Hand Surg 29
between the two groups was significant
( p < 0.001).
Subjects who expressed concerns about their
facial appearance were also significantly more
likely to express concerns about their fixed den-
tal prostheses. They also reported more anxiety
and depression, and were unsure of having any
close friends. In addition, they believed their
clefts to have influenced their choice of occu-
pation and considered their jobs unvaried and
lacking in contact with customers or clients
(Table IV).
Of the 233 participants, 221 responded to the
question about desire for further treatment. Of
that group, 35% stated that they would like to
have some form of additional treatment (Table
V).
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Table IV. Self-reports of concerns about facial appearance and social psychological concerns
Fixed dental Have close Choice of Variation Occupational
Speech prosthesis Anxious Depressed friends occupation in work contact

Percentage Percentage Percentage

Percentage Percentage often or often or Percentage influenced Percentage Percentage
No concerned No concerned No sometimes No sometimes No that do No by cleft No with much No with much
~

Number of 226 222 225 224 225 219 181 186

respondents
to both questions

Appearance
All subjects with clefts
Concerned 63 40 62 15 61 69 60 55 63 79 60 13 52 23 52 29
p value <0.001 <O.Cil <0.001 <0.001 C0.05 <0.05 <0.001 ~0.05
Not concerned 163 15 160 4 164 35 I64 26 162 92 159 4 135 55 134 48
Men with c1eft.v
concerned 45 42 44 14 43 61 43 54 45 73 43 12 40 28 40 33
p value <0.001 10.01 <0.01 <0.01 <0.001 20.05 <0.01 >0.05
Not concerned 117 15 114 2 118 37 118 26 116 92 114 4 103 56 103 45
Women with clefts
*cr

Lo
Concerned
p value
Not concerned
18

46
33
>0.05
13
18

46
17
<0.05
9
18

46
89
<0.001
33
17

46
59
(0.05
22
18

46
94
>o.os
91
17

45
18
>0.05
7
12

32
8
<0.01
50
12

31
17
<0.05
58
2
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6 2
p.
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2 f?.
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4 Table V. Demographic, diagnostic, variables and desire for additional treatment

-a
F
~

Type of treatment requested

Requesting further
treatment Surgica 1 Dental Speech therapy
3
CL
Percentage Percentage Percentage Percentage 2
requesting requesting requesting requesting Q
No further No further No further No further
responding treatment responding treatment responding treatment responding treatment
Total 22 1 35
(n = 233)
Type of cleft
Left 119 26 125 14 125 11 125 4
Right 43 44 45 38 45 11 45 2
Bilateral 59 46 62 26 62 15 62 7
p value (0.05 <0.001 >0.05 >0.05
Appearance
Concerned 60 52 63 35 63 13 63 5
p value <0.01 co.01 >0.05 >0.05
Not concerned 159 29 165 17 165 12 165 4
Speech
Concerned 47 58 51 33 51 12 49 8
p value <0.001 (0.05 >0.05 <0.01
Not concerned 171 29 178 19 178 12 178 3
Psychological
problems
Anxiety 97 45 102 28 102 20 102 7
p value co.01 >0.05 co.01 >0.05
No anxiety 119 26 125 17 125 6 125 2
Parents
One or both
parents deceased 44 50 46 39 46 13 46 2
p value (0.01 (0.01 >0.05 >0.05
Both alive 173 31 182 18 186 12 104 9

There was no significant difference between
the overall proportion of men and women who
requested further treatment. A breakdown of
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the data by cleft subtype, however, showed that
only 26% of the subjects with left CLP desired
further treatment compared with 44% of those
with right CLP and 46% of those with bilateral
CLP (p < 0.05). The subgroups were too small
to allow testing for possible differences between
sexes. Additional surgery was the treatment
most often requested, followed by dental treat-
ment and speech therapy. A surprisingly low
percentage of patients with left CLP requested
further surgical treatment.
The desire for further treatment was sig-
nificantly associated with a number of other
variables: self-reported concerns with facial
appearance, speech, anxiety, and whether one
or both parents were deceased (Table V). For
example, of 63 subjects with concerns about
their appearance, 35% requested further sur-
gical treatment and only 17% with no reported
For personal use only.
concerns about their appearance asked for
additional surgery (p < 0.01). Significantly
more subjects with concerns about speech
asked for surgical treatment or speech therapy
than subjects with no speech concerns. Subjects
who reported anxiety expressed a greater desire
for dental treatment. Subjects with one or both
parents deceased requested surgical treatment
significantlymore often than subjects with clefts
whose parents were both alive (p < 0.01).
DISCUSSION
The questionnaire was not given in an identical
manner to subjects with clefts and controls (7).
This should be born in mind when the results
of psychological functioning are interpreted:
subjects may respond differently to an inter-
viewer than to a self-administered question-
naire. Furthermore, the individuals with clefts
knew they were participating as former patients
whereas the controls had been randomly selec-
ted, so there were reasons for response bias.
Not only were anxiety, depression, and pal-
pitations more often reported by subjects with
CLP in the present study, but also the mean
number of psychological problems was sig-
nificantly higher compared with controls.
Psychosocial adjustment II 335
In the present study men with clefts seemed
to adjust less well than women. They also
appear to have more marital and income prob-
lems (7). Furthermore, the data suggest that
men were less confident socially. Leonard et
al. ( 3 , however, reported lower self-concept
scores for adolescent girls with clefts.
Within the CLP group we found a significant
association between concerns about appear-
ance, speech, fixed dental prosthesis, psy-
chological problems, uncertainty about having
close friends, choice of occupation, occu-
pational variation, and occupational contact.
The level of psychological wellbeing may,
therefore, be particularly low among subjects
with concerns about appearance. There also
seems to be an increased desire to seek further
treatment within this sub-group. No particular
direction of causality can be deduced, however,
and the relationship of various measures of
psychosocial dysfunction may reflect a more
fundamental feeling of insecurity.
More than a third of patients expressed a
wish for further treatment, mainly surgery. This
proportion gives little indication of patient sat-
isfaction; all patients had been discharged as
their treatment was completed, and had every
reason to believe that nothing more could be
done to improve their condition. About half of
the patients reported concerns without
requesting further treatment.
These findings suggest that the patients' psy-
chological insecurity and self-perceived social
dysfunction has contributed to motivation to
seek treatment though again no direction of
causality can be deduced.
If overprescription of treatment and entry
into re-treatment with a diminishing potential
for worthwhile improvements are to be avoided
it is clear that the CLP team as a whole should
collaborate to provide an integrated approach
to the patients care, including counselling as an
alternative to treatment that has unfavourable
risk-benefit projections. Such services are not
readily available. In a survey of mental health
services offered by cleft/cranofacial teams,
Broder and Richman (2) found that psychology
was not represented in 60% of the 195 teams
studied, while psychiatry was not represented
in 86%; 20% of the 'team directors did not
Scand J P h i Reconstr Hand Surg 29
 336 T. Ramstad et al.
perceive mental health services as important to
the treatment of patients with clefts.
The finding of a greater desire for further
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treatment among subjects with a deceased par-
ent is unexplained but it is tempting to speculate
that some patients may suppress wishes for
further treatment while their parents are alive
or alternatively shift previous parental depen-
dence to the therapist. Further data are clearly
required.
These data raise several questions for future
research: Do women adapt better to clefts? Is
the woman with a cleft more attractive to a man
without CLP than a man with CLP to a woman
without a cleft? Are the treatment results in
right sided CLP different from those for left
sided CLP (as left CLP is a more common
anomaly, surgeons will have more routine in
operating on the left than on the right)? Are
there particular styles of interaction within CLP
marriages? Does the cluster of problems
reported by subjects with CLP-anxiety,
For personal use only.
depression, concerns about appearance and
speech, and wish for further treatment-indi-
cate substitution of complaining behaviour for
coping behaviour? Does the presence of parents
continue to have an important bearing on the
adjustment of adults to their cleft(s)?
Such questions, and indeed investigation of
the complex mix of rearing practices, societal
response, and extended experience of treat-
ment, represent a major challenge for CLP
researchers which must go beyond present strat-
egies of enquiry, and use alternative research
designs and methods (11).
ACKNOWLEDGEMENTS
This study was supported by Norsk Dental Depots
fond for odontologisk forskning and Den norske
tannlegeforenings fond ti1 odontologiens fremme.
REFERENCES
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irsunders~kelsen,Dokumentasjon Del 1, 1980. N-0027 Oslo
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Correspondence to:
Tore Ramstad
Dental Unit
Department of Plastic Surgery
Fax: +47 22 86 74 66