School of Healthcare Studies, University of Leeds, Leeds
Institute of Psychiatry, London
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Correspondence: R. Newell, School of Healthcare Studies, University of Leeds, 22 Hyde Terrace, Leeds LS2 9LN
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ABSTRACT |
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Aims To compare fearful avoidance of people with a facial disfigurement with that of a group of patients with phobia.
Method Comparison of Fear Questionnaire agoraphobia, social phobia and anxiety depression sub-scale scores of 112 facially disfigured people (who scored high on Fear Questionnaire problem severity in three survey studies) with those of 66 out-patients with agoraphobia and 68 out-patients with social phobia.
Results Facially disfigured people and patients with social phobia had similar Fear Questionnaire scores. In contrast, facially disfigured people scored lower on the agoraphobia sub-score but higher on the social phobia sub-score than did patients with agoraphobia.
Conclusions Facially disfigured people with psychological difficulties resembled people with social phobia on Fear Questionnaire social phobia, agoraphobia and anxiety/depression sub-scores but were less agoraphobic and more socially phobic than were people with agoraphobia. Facially disfigured people thus appeared to be socially phobic and to deserve the cognitivebehavioural therapy that is effective for such phobias.
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INTRODUCTION |
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Shortcomings of previous studies of psychological difficulties in
disfigurement
Follow-up studies of the psychological difficulties of disfigured people
are problematic (reviewed by Malt,
1981; Rumsey,
1983). Numbers are small and response rates low. Many of the
studies followed up only serious burns sufferers, and the study groups were
not divided into adults and children, or by cause of the burn
(Malt, 1981). Much of the work
was carried out with patients still awaiting or receiving treatment
(Rumsey, 1983), who might be
atypical because they might still have expectations of further improvement,
further treatment or recurrence of symptoms. Studies often did not identify
whether dysphoria was due to disfigurement, disability, post-traumatic stress
or premorbid personality. Comparisons with the general population were rarely
drawn.
Emerging issues from previous studies
Some issues have emerged. Of 70 burned adults followed up 3-13 years later,
23% had impaired psychological adjustment and more severely injured people
were more disturbed (44%) than those with minor injuries (16%)
(Malt & Ugland 1989). Of
42 burned adults, 21% needed psychological help 18 months later
(Faber et al, 1987),
and 30-40% of 45 discharged burns patients had severe psychological
difficulties both six months and two years after discharge
(Wallace, 1988).
None of the above studies noted the site of the burn. Facial involvement was the best predictor of difficulty in 23 burns patients (Williams & Griffiths, 1991). More caseness (General Health Questionnaire (Goldberg & Williams, 1991) and Hospital Anxiety and Depression Scale (Snaith & Zigmond, 1994)) was found in 105 ex-patients who had received plastic surgery to the face than in general population samples (Newell, 1998). They were no longer in treatment and so might be regarded as more typical of facially disfigured people as a whole than are patients still in contact with services.
Approaches to treatment
Promising treatment for facial disfigurement involves appropriate social
skills training (Feigenbaum,
1981; Partridge et
al, 1994; Robinson et
al, 1996). For example, in the social skills training package
taught by the self-help group Changing Faces, subjects showed a
modest fall in anxiety and a rise in confidence
(Robinson et al,
1996), although there was no control group.
In a randomised controlled study, 106 disfigured people, who were offered a self-help leaflet, improved modestly but statistically significantly more than the no-treatment controls at three-month follow-up (Newell, 1998). The leaflet gave cognitivebehavioural advice regarding the need for exposure to social situations that were avoided following disfigurement (Newell, 1991, 1998). It noted that disfigured people may fear and avoid social situations because of anxiety about their appearance and other people's possible responses to them, but that these can be overcome, just as with responses to chronic back pain (Lethem et al, 1983) and to disturbed body image in eating disorders (Slade, 1994).
Rationale for the present study
Qualitative accounts (Macgregor,
1951,
1979) and surveys
(Wallace, 1988;
Williams & Griffiths,
1991; Newell,
1998) attest to disfigured people's problems in public and suggest
the likely role of anxiety in maintaining them. The present study extends this
work by comparing fear and avoidance in facially disfigured people with
pretreatment scores of out-patients treated for agoraphobia or social
phobia.
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METHOD |
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Participants
Facially disfigured people (25 men, 87 women) were drawn from surveys of
dermatology patients, plastic surgery ex-patients and announcements in the
media. The out-patients with agoraphobia (27 men, 39 women) and social phobia
(28 men, 40 women) had exposure therapy at the Psychological Treatment Unit of
the Maudsley Hospital and their pre-treatment Fear Questionnaire ratings were
available on its computerised database; the patients with phobia were selected
from this database using a random selection facility built into the
database.
Ethics
For the disfigured people, ethical approval was gained from the relevant
local ethics committees and from R.N.'s academic school's ethics committee.
For the patients with phobia, ethical approval was not required for access to
anonymised data.
Measures
The Fear Questionnaire comprises scales rated 0-8, arranged as follows:
The Fear Questionnaire has no formal cut-off point for caseness, but higher scores denote more pathology. Score 4 on the global phobia scale shows a sufficiently severe phobic problem to warrant treatment (Newell, 1998). For facially disfigured people, in the global phobia 0-8 subscore the word problem was substituted for phobia. This modification was also used by Corney et al (1990) and forms the global problem severity score referred to in this paper. Re-validation of the Fear Questionnaire might be considered necessary in the light of this change, but it should be noted that validity studies of this much-used measure are, in any case, limited. Further validation of the Fear Questionnaire in both its original form and the modified form used in the present study would be valuable.
Procedure
Facially disfigured people were recruited from dermatology out-patient
clinics, ex-patient lists of plastic surgeons and via the media. Subjects
completed a wide range of measures of behavioural and psychological
disturbance (Newell, 1998).
They were included in the present study if they rated Fear Questionnaire
global problem severity as 4 or more, so reaching a problem severity criterion
commonly used for inclusion in treatment by behaviour therapists.
For patients with phobia, the following patient information was extracted from the computer database: age at entry into treatment, gender, diagnosis and pre-treatment scores on Fear Questionnaire global phobia (global problem severity score), agoraphobia sub-score, social phobia sub-score and anxiety/depression sub-score. These scores were compared with those of the facially disfigured subjects.
Data analysis
The current study predicts similarity between two groups. This is similar
to an estimation of equivalence between two treatments and is problematic,
particularly with relatively small sample sizes
(Senn, 1993). It may, however,
be possible to assert equivalence on the basis of no significant difference
being found between the groups when the sample sizes are known to be
sufficiently large to find such differences, provided that an adequate
definition of equivalence is made beforehand
(Gould, 1993).
The relevant power calculation is shown in Table 1. Conventional alpha (5%) and beta (80%) levels were used. In the absence of previous studies, the effect size calculation for the chosen sub-scores was based on the variance of scores of disfigured subjects eligible to enter the study and an assumption of clinical difference between the groups of 8 points on each sub-score, reflecting a difference of 1.6 on each item of each sub-score. A difference of <2 points is unlikely to be clinically important, so differences of this magnitude or less are an appropriately stringent test of equivalence. The advice of a medical statistician was sought in the design of the project and examination of the data.
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This study's 112 facially disfigured people, 66 patients with agoraphobia and 68 patients with social phobia yielded enough power to detect between-group differences, except for the agoraphobia sub-score to distinguish patients with agoraphobia from facially disfigured people.
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RESULTS |
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The facially disfigured group had an even greater female preponderance than did the patients with agoraphobia and social phobia, was older by nine years than these patients with social phobia and had slightly less problem severity than patients with agoraphobia or social phobia (Table 3).
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To take into account potential interaction with the independent variables (facial disfigurement v. agoraphobia and v. social phobia), between-group agoraphobia and social phobia Fear Questionnaire sub-score differences were compared by analysis of covariance using problem severity as a covariate for facial disfigurement v. patients with agoraphobia and problem severity plus age as covariates for facial disfigurement v. patients with social phobia. Gender as a dichotomous categorical variable is not generally recommended for consideration as a covariate (Munro & Page, 1993) and so was entered into the analysis as a further independent variable for comparisons of facially disfigured people v. patients with agoraphobia and social phobia. The results are shown in Table 4.
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There were no differences by gender on the agoraphobia (F=0.32, d.f.=1, P=0.574, NS) or social phobia sub-scores (F=3.38, d.f.=1, P=0.068, NS), nor any significant differences between facially disfigured people and patients with social phobia on social phobia, agoraphobia and anxiety/depression scores. Compared with patients with agoraphobia, facially disfigured people had significantly less agoraphobic avoidance, more social phobic avoidance and similar anxiety/depression. Group mean differences were not clinically important (by the criteria suggested above) between the facially disfigured and social phobia groups. For facially disfigured v. agoraphobia groups, only the agoraphobia sub-score difference reflected group mean differences likely to be clinically important.
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DISCUSSION |
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Role of fear and avoidance in social difficulty following facial
disfigurement
The similarities found suggest that the social difficulties reported by
disfigured people (Macgregor,
1951,
1990;
Rumsey, 1983; Malt & Ugland, 1989) may
be due to phobic anxiety specific to social situations rather than to more
generalised anxiety. This supports a fear-avoidance formulation of their
difficulties (Newell, 1991,
1998) based on Lethem et
al's (1983) model of
exaggerated pain perception. The model proposes that the difficulties
experienced by disfigured people in social situations are maintained primarily
by fear of the responses of others to them in such situations and
associated avoidances. Although there is ample evidence that the
actual responses given to disfigured people in social situations are
often negative, the model attempts to distinguish between those who develop
psychological difficulty following disfigurement and those who do not, in much
the same way as the Lethem et al
(1983) account does for
responses to chronic back pain and Slade's
(1994) model of body image
does for eating disorders. Although most disfigured people show no marked
social avoidance or psychological difficulty, they probably have higher rates
of such difficulties than the general population
(Newell, 1998). Fear-avoidance
may explain why some people develop psychological problems after
disfigurement. Difficulty and anxiety in social situations are the most
frequent complaints by disfigured people
(Macgregor, 1979; Rumsey, 1983). Moreover, in
three surveys of dermatology patients, plastic surgery ex-patients and
media-recruited disfigured people (Newell,
1998), subjects showed marked social avoidance on validated
scales, a measure of body attitudes and avoidances owing to facial appearance,
response to an open-ended question about avoidance and spontaneous comments.
Against this background, the social difficulties of facially disfigured people
seem to reflect considerable phobic anxiety.
Clinical implications
Our findings have treatment implications. Cognitivebehavioural
therapy helps phobias in general, including social phobia
(Fonagy & Roth, 1996), and
can help even with minimal therapist input
(Newell, 1998). Given the
large number of disfigured people and the likelihood that few are in contact
with psychological services (Wallace,
1988), this is an important issue. A major initiative to reduce
facially disfigured people's difficulties and evaluate the outcome
(Robinson et al,
1996) uses much therapist time (at least a two-day
foundation workshop, with the possibility of further follow-up
(Partridge et al,
1994)). More emphasis on exposure therapy might improve the value
of this approach, but it would still be expensive given the large numbers of
disfigured people in the community. It could be made more cost-effective by
trying the self-treatment approaches that have proved to be effective in
phobic disorders.
If the present study's findings prove robust, such an approach could also help the prevention and early recognition and treatment of psychological difficulties of disfigured people. Preparation for surgery could stress the need to expose one's changed body part in social situations, as suggested, for example, by Newell (1991).
Limitations and possible further work
The study would have benefited from examination of a wider range of
measures and an investigation of how far the disfigured subjects were in fact
subjected to adverse comments from others. A structured interview to determine
how far the disfigured subjects met established criteria for a diagnosis of
social phobia would also have been useful. However, resource constraints did
not allow the addition of these elements. A replication of the present study
is required, and might include such components. Additionally, controlled
studies of cognitivebehavioural self-treatment with minimal therapist
input for the difficulties of disfigured people would be welcome, because the
plight of this group has long been neglected.
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Clinical Implications and Limitations |
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LIMITATIONS
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Received for publication June 8, 1999. Revision received September 7, 1999. Accepted for publication September 10, 1999.