ilness perception

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http://hpq.sagepub.com/content/17/3/399The online version of this article can be found at:

DOI: 10.1177/1359105311416874

2012 17: 399 originally published online 22 August 2011J Health PsycholHannah DeJong, Jessica Hillcoat, Sarah Perkins, Miriam Grover and Ulrike Schmidt

Illness perception in bulimia nervosa

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Journal of Health Psychology

17(3) 399408

The Author(s) 2011

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DOI: 10.1177/1359105311416874

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Illness perception refers to the cognitive

representations a person has about their ill-

ness. One of the most influential models of

illness perception is the Self Regulatory Model

(SRM) (Leventhal et al., 1997; 2003; 1984),

which proposes five major components of ill-

ness perception: identity, timeline, conse-

quences, causes and cure. Identity refers torepresentations about the nature of the illness,

the symptoms associated with it and the labels

attached to the illness. Timeline includes

cognitions about the duration or chronicity of

the illness, and also about whether it has a

cyclical course. The consequences compo-

nent concerns perceptions about the severity

of the illness and the impact it has on general

functioning. Causes refers to the persons

ideas about what factors are responsible forcausing the illness. Cure is sometimes also

labelled as controllability, and involves cog-

nitions about the extent to which the illness is

amenable to control or cure, either through

ones own personal efforts or through treat-

ment. The consistency and validity of these

proposed components has been confirmed by

several reviews (Skelton and Croyle, 1991).

Illness perception is considered an important

element of understanding peoples experience

of their illness, and is closely related to severalimportant outcomes, such as coping, function-

ing and emotional distress. Patients who per-

ceive their illness as being chronic, having

serious consequences and not being responsive

to control or cure are likely to display poor

physical and social functioning, passive coping

styles and a high degree of distress (Heijmans,

Illness perception inbulimia nervosa

Hannah DeJong, Jessica Hillcoat, Sarah Perkins,

Miriam Grover and Ulrike Schmidt

AbstractThe study was designed to extend our understanding of illness perceptions in patients with bulimia nervosa

(BN). Seventy-eight participants with BN or BN-type Eating Disorder Not Otherwise Specified (EDNOS-BN)

completed the Revised Illness Perception Questionnaire (IPQ-R) (Moss-Morris et al., 2002). Clinical

variables were also assessed. Participants experienced their ED as chronic, with serious consequences and

high associated levels of anxiety and depression. The disorder was attributed primarily to psychological

causes. The results indicate the perceived severity of BN, and high level of associated distress. These findings

highlight the potential for targeting illness perceptions in treatment.

Keywords

bulimia nervosa, eating disorders, illness perceptions

Institute of Psychiatry, Kings College London, UK

Corresponding author:

Hannah DeJong, Institute of Psychiatry, Box P059, De

Crespigny Park, London SE5 8AF, UK.

Email: [email protected]

16874HPQXXX10.1177/1359105311416874DeJong et al.Journal of Health Psychology

Article

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400 Journal of Health Psychology 17(3)

1998; 1999; Scharloo et al., 1998; Vaughan

et al., 2003). Illness perceptions are also

related to expectations about treatment,

engagement and adherence with treatment and

treatment outcomes. For example, following a

myocardial infarction, patients are more likely

to make healthy lifestyle changes and attend

rehabilitation sessions if they believe that

their condition is amenable to control or cure,

and if they relate its causality to their lifestyle

(Cooper et al., 1999; Petrie et al., 1996,

Weinman et al., 2000). Understanding and tar-

geting patients perceptions of their illnesses

may therefore have clinical benefits.

The Illness Perception Questionnaire and its

revised version (IPQ and IPQ-R; Moss-Morris

et al., 2002, Weinman et al., 1996) are based on

the SRM, and have been developed as methods

for assessing illness perception in large groups.

The IPQ-R contains nine subscales, based

around the components of Leventhals SRM:

identity, timeline-duration, timeline-cyclical,

consequences, personal control, treatment con-

trol, emotional representations, illness coher-

ence and causes. The emotional representations

subscale was added to the revised version, in

recognition that emotional aspects of illness

perception are neglected in the SRM, which

focuses exclusively on cognitive representa-

tions (Moss-Morris et al., 2002). Illness coher-

ence was also added, as a measure of the extent

to which people feel their illness perceptions

provide a coherent and useful understanding of

their illness.

Illness perceptions may help to account for

the high degree of ambivalence about change

and reluctance to engage with treatment that are

common barriers to treatment of BN (Killick

and Allen, 1997, Vitousek et al., 1998). For

example, a perceived lack of amenability to

control or cure may explain reluctance to

engage in treatment. BN is also associated with

high levels of distress, maladaptive coping

strategies (Troop et al., 1994) and poor reported

quality of life (Mond et al., 2005). These factors

have been shown to be associated with illnessperceptions, such as perceived chronicity and

serious consequences, in other patient groups.

We might therefore predict similar patterns of

illness perception in people with BN. Previous

work by Mond et al. (2008), using a clinical

vignette to elicit illness perceptions, indicates

that women with bulimic disorders tend to

regard these disorders as difficult to treat and

prone to relapse. They also perceived these dis-

orders as distressing and most commonly

named low self-esteem as a likely cause.

A handful of studies have previously used

the IPQ-R to assess illness perception in people

with eating disorders. Holliday et al. (2005)

examined illness perception in people with ano-

rexia nervosa (AN) and also evaluated lay peo-

ples perceptions of AN. They showed that

people with AN perceived their illness as

chronic, distressing, having serious negative

consequences and being resistant to control or

cure. In contrast, lay people were more optimis-

tic, rating the illness as less chronic and more

amenable to control or treatment. Both groups

endorsed primarily emotional and psychologi-

cal causes. Stockford et al. (2007) used a modi-

fied version of the IPQ-R in a mixed eating

disorder (ED) group, and related this measure

to a readiness to change scale. They found that

these two scales were closely related, with high

levels of emotional distress and perceived nega-

tive consequences predicting increased readi-

ness to change.

Three studies by a Spanish group (Quiles

and Terol, 2010, Quiles Marcos et al., 2007;

2009) have used a translated and modified ver-

sion of the IPQ-R in mixed ED groups and also

the relatives of these patients. IPQ-R scores

were related to emotional adjustment and psy-

chosocial adaptation, levels of distress, depres-

sion and anxiety. In particular, patients who

viewed their illness as highly distressing and

chronic, with a large number of associated

symptoms and low treatment control, experi-

enced more psychological distress. Conversely,

patients who perceived their illness to be sub-

ject to a high degree of personal control and

curability had lower levels of depression andanxiety. There was also a positive relationship

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DeJong et al. 401

between the degree of dissimilarity in patients

and relatives views of the illness, and patient

levels of distress, depression and anxiety.

In previous studies of illness perception, BN

has tended to be under-represented, with only

small numbers of participants with BN included

in mixed ED samples. The aim of the present

study was to assess illness perception in a larger

group of individuals with BN and relate this to

clinical measures, including symptomatology,

duration of illness, anxiety and depression. We

hypothesized that individuals with BN would

describe their disorder as distressing and

chronic, with serious negative consequences,

and that they would view it as being resistant to

control or cure. We hypothesized that strong

perceptions of this nature would be associated

with higher levels of anxiety and depression,

more severe ED symptoms and a longer dura-

tion of illness.

Method

Participants

Participants were recruited to take part in atreatment study designed to assess the effec-

tiveness of a CD-ROM based cognitive behav-

ioural intervention for BN and EDNOS-BN

(Schmidt et al., 2008). Of the 97 participants

in the CD-ROM study, 78 completed meas-

ures for the present study. Participants were

recruited from consecutive referrals to the

adult Eating Disorder Outpatients Service in

the South London and Maudsley National

Health Service (NHS) Foundation Trust dur-ing 20032006.

Inclusion criteria for the study were a diagno-

sis of BN or EDNOS-BN, confirmed by a senior

clinician, as well as key bulimic behaviours (ie

bingeing and compensatory behaviours) at a

minimum average frequency of once per week

over the preceding three months. Exclusion cri-

teria were insufficient knowledge of English or

poor literacy skills, severe learning disability,

anorexia nervosa, severe depression, acute sui-cidality and alcohol or substance dependence.

Exclusion criteria were assessed via clinical

interview. Patients on antidepressant medication

were included, provided they had been on a

stable dose for a minimum of four weeks prior

to assessment. All participants provided writ-

ten informed consent and ethical approval for

the study was obtained from the joint research

ethics committee of the Institute of Psychiatry

and the South London and Maudsley NHS

Foundation Trust.

Measures

The questionnaires were given as part of a

larger battery of questionnaires associated with

the CD-ROM study. All measures reported herewere taken at baseline. Clinical interviews were

used to determine diagnosis and duration of ill-

ness. Measures of current height and body

weight were used to calculate Body Mass Index

(BMI; kg/m2).

Revised Illness Perception Questionnaire (IPQ-R).

Patients perceptions of BN were assessed using

the IPQ-R (Moss-Morris et al., 2002), which

measures patients cognitive and emotionalrepresentations of their illness. It consists of

nine subscales: identity, timeline-duration,

timeline-cyclical, consequences, personal con-

trol, treatment control, emotional representa-

tions, illness coherence and causes. The

questionnaire has good internal reliability, dis-

criminant validity and predictive validity

(Moss-Morris et al., 2002).

Illness identity is measured by the number of

symptoms that participants report having expe-rienced and consider to be related to their eating

disorder. A total score was calculated, with each

item coded as yes = 1 or no = 0, giving a maxi-

mum possible score of 14. Cause is assessed

by asking participants to rate the extent to which

they agree or disagree that listed factors caused

their illness. This gives mean score for each

causal item (where 1 = strongly disagree and 5

= strongly agree). We also calculated the per-

centage of participants who either agreed orstrongly agreed that each item played a causal



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role in their illness. The remaining seven sub-

scales were scored by calculating a mean score

from all the relevant items. Each item is rated

from 1 to 5 (where 1 = strongly disagree and

5 = strongly agree) giving a maximum possible

score of five for each subscale (see Appendix 1

for sample items).

Hospital Anxiety and Depression Scale (HADS).

The HADS is a 14-item scale that measures

anxiety and depression (Zigmond and Snaith,

1983). This scale has been used with a wide

variety of patient groups, and gives clinically

meaningful results when used as a psychologi-

cal screening tool or in correlational studies

(Herrmann, 1997).

Eating Disorder Examination (EDE). The EDE

(Cooper and Fairburn, 1987) is a reliable

interview-based assessment of bulimic symp-

tomatology with good discriminant validity

and satisfactory internal reliability (Cooper

et al., 1989). It measures frequency of physi-

cal symptoms (bingeing, self-induced vomit-

ing, laxative use, diuretic use and excessive

exercise), as well as thoughts and attitudesrelated to eating disorders. Four subscale

scores are generated: dietary restraint, eating

concern, shape concern and weight concern.

The mean of these scores can be given as a

global indicator of eating disorder pathology.

Analysis

Data were analysed with SPSS Version 15.0 for

Windows. Kolmogorov-Smirnov tests showed

that the IPQ-R subscales were non-normally

distributed and so non-parametric tests wereused throughout the analysis. Spearmans rho

correlation coefficients were used to investigate

relationships between the IPQ-R and clinical

variables and among the IPQ-R subscales.

Results

Participant characteristics

Out of the 78 participants, 49 were diagnosedwith bulimia nervosa and 29 were diagnosed

with EDNOS-BN. Four males and 74 females

participated in the study. Clinical and demo-

graphic characteristics of the sample are shown

in Table 1. Median values for both HADS anxiety

and depression were above the clinical cut-off

for probable anxiety and depression (Zigmond

and Snaith, 1983).

Illness perception questionnaire

All subscales of the IPQ-R showed good inter-

nal reliability. Cronbachs alpha values ranged

from 0.73 (consequence subscale) to 0.90 (ill-

ness coherence subscale).

Table 1. Clinical and demographic characteristics.

Sample characteristic Median Inter-quartile range Range

Age (years) 26.0 22 31 17 51

Duration of illness (years) 7.0 3 12.50 0.5 32.0

BMI 21.70 20.50 24.60 18.83 42.35

EDE dietary restraint 3.40 2.75 4.40 0.2 5.8

EDE eating concern 2.80 1.60 3.85 0.0 5.75

EDE shape concern 4.38 3.12 5.19 0.0 6.0

EDE weight concern 3.60 2.40 4.60 0.4 6.0

EDE global score 3.41 2.60 4.36 0.35 5.47

HADS anxiety 12.0 11.0 13.0 4 16HADS depression 11.0 9.0 12.0 4 16

Notes: BMI = Body Mass Index; EDE = Eating Disorder Examination; HADS = Hospital Anxiety and Depression Scale.



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DeJong et al. 403

Identity. All symptoms were endorsed by at

least one participant as being related to their ill-

ness but overall participants appeared to have a

relatively low illness identity, with a mean score

of 7.8 [SD = 3.40].

The symptoms most commonly associated

with BN were fatigue (80.9%), loss of strength

(76.1%), weight loss (74.2%), dizziness

(72.9%) and upset stomach (70.0%). Two of the

least frequently related symptoms were sore

eyes (18.8%) and wheeziness (10.8%).

Timeline, control, consequences, illness coherence

and emotional representations. For all of the

previously mentioned subscales, the maximum

possible score is five. The median scores and

inter-quartile ranges were as follows: timeline-

chronic median = 3.33, IQR = 0.83; timeline-

cyclical median = 3.75, IQR = 1.25; personal

control median = 3.67, IQR = 0.83; treatment

control median = 3.8, IQR = 0.6; consequences

median = 3.83, IQR = 0.83; and illness coher-

ence median = 3.25, IQR = 1.4; emotional

representations median = 4.08, IQR = 0.71.

Causes. Seventeen of the 18 possible causes

were endorsed as contributory factors in the

development of the illness (see Table 2).

The most strongly endorsed were emotional

state (endorsed by 87.3% of participants), own

behaviour (79.5%) and stress/worry (78.2%).

The lowest ranked causes were pollution in the

environment (0%), altered immunity and germ/

virus (both 2.6%).

Correlations between IPQ-R subscales. There were

several significant correlations between subscales

of the IPQ-R. Emotional consequences were pos-

itively correlated with identity [r = .370, p =

.010], consequences [r= .355,p = .002] and ill-

ness coherence [r= .308,p = .008]. Consequences

were also correlated with identity [r= .332,p =

.021] and treatment control [r= .278,p = .016].

Treatment control and personal control were cor-

related with one another [r= .326,p = .004].

Correlations between IPQ-R subscales and clinical

measures. Relationships between the IPQ-R

subscales and clinical measures were also

Table 2. Causal attributions about bulimia nervosa.

Proposed cause Percentage of participants whoagree or strongly agree (%)

Mean score (SD)

Emotional state 87.3 4.4 (0.67)

Own behaviour 79.5 4.1 (0.98)

Stress/worry 78.2 4.0 (0.95)

Mental attitude 75.7 4.1 (0.98)

Diet/eating habits 75.7 4.2 (0.98)

Personality 65.4 3.7 (1.20)Family problems and worries 55.1 3.6 (1.21)

Overwork 34.6 2.8 (1.34)

Alcohol 16.6 2.0 (1.24)

Ageing 15.4 2.1 (1.28)

Smoking 11.6 1.8 (1.12)

Chance/bad luck 9.0 1.9 (1.03)

Poor medical care in my past 6.4 1.8 (0.98)

Accident/injury 5.1 1.6 (0.84)

Altered immunity 2.6 1.8 (0.98)

Germ/virus 2.6 1.39 (0.74)

Pollution in environment 0 1.37 (0.51)



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investigated. BMI was negatively correlated

with perceived illness identity, personal control

and negative consequences. Illness duration

was negatively correlated with perceived treat-

ment control. Anxiety was positively correlated

with perceived chronicity, negative conse-

quences, emotional representations and illness

coherence. All subscales of the EDE and the

global EDE score were positively correlated

with emotional representations. The EDE die-

tary restraint subscale was positively correlated

with illness identity, while the EDE shape con-

cern subscale was negatively correlated with

perceived personal control (see Table 3).

Discussion

This study extends previous findings of illness

perceptions in the eating disorders to a large,

clinical sample of outpatients with BN and

EDNOS-BN. Participants with these disorders

perceived their illness as moderately chronic,

with a degree of variation over time. They

reported strong negative consequences of the

disorder and a very high degree of related

emotional distress. This was consistent with

the high levels of anxiety and depression

reported. However, perceptions of control

were also quite high, suggesting that partici-

pants felt able to manage the eating disorder to

some degree and were optimistic about the

utility of treatment. This pattern of findings is

similar to that found in patients with AN

(Holliday et al., 2005), with the exception that

BN is perceived as being more cyclical. This

fits intuitively with the binge-purge cycle

associated with this disorder.

Participants in the present study associated

only a moderate number of symptoms with their

eating disorder. The number of symptoms

endorsed was considerably lower than for the

AN sample in Holliday et al.s (2005) study.

This could suggest a fairly weak illness identity,

but may actually be a reflection of the use of the

unadapted IPQ-R. Several previous studies

have used altered versions of this measure, withthe addition of more symptoms that are related

to eating disorders (e.g. dry and rough skin,

irregularities in menstruation). The results

reported here, using the unaltered version, may

therefore underestimate the number of symp-

toms associated with BN. However, the scores

reported here are similar to those found by

Quiles Marcos et al. (2007) across all ED diag-

noses, using an adapted version of the IPQ-R.

In the present study, participants primarily

attributed their eating disorders to psycholog-

ical factors, such as emotional state and stress/

worry, but also seemed to view the disorder as

partially self-inflicted (eg endorsing own

behaviour as a causal factor). The perceived

role of psychological factors coheres well

both with the results of previous studies

(Quiles Marcos et al., 2007; 2009) and with

current models of EDs (Fairburn et al., 2003;

Schmidt and Treasure, 2006; Sassaroli and

Ruggiero, 2005). The causal attributions

endorsed for BN are also similar to those

reported for AN (Holliday et al., 2005; Quiles

Marcos et al., 2007).

Although the role of biological factors in the

development and maintenance of bulimia ner-

vosa has been emphasized in much previous

research (Kaye, 2008; Mathes et al., 2009;

Monteleone and Maj, 2008; Steiger and Bruce,

2007), participants in the current study did not

strongly endorse these causes. This may par-

tially be attributable to the wording of the IPQ-

R. However, given that participants strongly

endorsed psychological and self-inflicted dis-

order explanations, we might hypothesize that

they tend to underestimate the role of biologi-

cal factors factors that may be less stigmatis-

ing than psychological and self-inflicted causal

factors. This seems to be the case for AN,

with one study showing that student nurses

expressed more positive attitudes towards peo-

ple with AN when given information about the

biological and genetic causes of AN, than when

given information about sociocultural influ-

ences (Crisafulli et al., 2008). Therefore, edu-

cating patients about the role of genetic and

biological variables in the onset of eating dis-orders may be beneficial.



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DeJong et al. 405

There were several relationships found

between different aspects of illness perception.

A strong illness identity, perceived negative

consequences and a coherent illness under-

standing were all associated with greater emo-

tional responses to the disorder. It seems likely

that experiencing more symptoms and negative

consequences related to ones disorder contrib-

utes to a more negative affective response.

Personal and treatment control were alsorelated, implying that personal management of

symptoms and any treatment provided may

be seen as complementing one another.

Surprisingly, participants who viewed their dis-

order as having serious consequences were

more likely to perceive treatment as being ben-

eficial. It may be the case that this surprising

relationship reflects perceived need for special-

ist treatment, or ease of accessing treatment

those who view their eating disorder as havingsevere consequences may be more likely to

both recognize a need for professional help and

be offered this.

Illness perceptions were also related to sev-

eral clinical variables in this study. Participants

who experienced more symptoms, as measured

by the EDE, had stronger emotional responses

to the disorder. These emotional responses were

also associated with high levels of anxiety.

Participants with a coherent illness perception,

who viewed their disorder as chronic and hav-ing serious consequences also had elevated

anxiety levels. The generally elevated anxiety

and depression levels in this sample indicate

that BN is a disorder with serious emotional

consequences and a high degree of associated

distress. These results also cohere well with

previous findings that illness perceptions are

related to anxiety levels and psychological dis-

tress (Quiles Marcos et al., 2007).

Low BMI was associated with high illnessidentity and increased negative consequences,

Table 3. Correlations between IPQ-R subscales and clinical measures.

Clinicalmeasure

IPQ-R subscale

Illnessidentity

Timelinechronic

Timelinecyclical

Treatmentcontrol

Personalcontrol

Consequences Emotionalrepresentations

Illnesscoherence

Illnessduration

.078 .194 .011 .259* .139 .186 .196 .014

BMI .301* .123 .028 .202 .276* .354** .176 .057

HADS anxietyscore

.218 .262* .027 .186 .034 .313** .450** .280**

HADSdepressionscore

.076 .002 .186 .039 .056 .029 .034 .094

EDE dietaryrestraint

.298* .186 .202 .092 .049 .045 .337** .033

EDE eatingconcern

.238 .076 .157 .064 .104 .038 .270* .043

EDE shapeconcern

.267 .050 .068 .100 .237* .007 .333** .123

EDE weightconcern

.163 .122 .119 .034 .139 .015 .248* .097

EDE globalscore

.279 .036 .188 .067 .175 .013 .351** .083

p* < .05, p** < .01Notes: HADS = Hospital Anxiety and Depression Scale; EDE = Eating Disorder Examination; BMI = Body Mass Index.



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but also with greater perceived personal

control. It may be that patients who are better

able to limit the frequency of their binge epi-

sodes, or to maintain a high level of dietary

restraint between binge episodes, are likely to

both maintain a lower BMI and perceive them-

selves as having a high degree of control over

their eating behaviours. A high degree of die-

tary restraint is likely to have various negative

physical effects. This may help to explain why

patients at lower BMIs tend to perceive their

disorder as having severe negative conse-

quences and why they endorse experiencing

more physical symptoms related to their disor-

der (ie have a strong illness identity).

Interestingly, longer illness duration was asso-

ciated with low perceived treatment control. This

relationship was also present in the data collected

by Stockford et al. (2007), suggesting that this is

a strong and reliable association. It is possible

that this reflects the likelihood that chronically ill

patients have experienced unsuccessful treatment

previously. This relationship has clinical implica-

tions, as patient expectations have been demon-

strated to be closely related to treatment outcomes

(Greenberg et al., 2006). This suggests a need for

motivational work with chronically ill patients in

order to encourage these individuals to engage

with treatment. The tendency for high levels of

shape concern to be related to low perceived per-

sonal control also has clinical implications, indi-

cating a possible need for a stronger focus on

these body shape concerns in treatment, aimed at

increasing patients perceived ability to manage

these concerns.

Strengths and limitations

This study extends previous findings in AN and

mixed ED samples to a group of patients meet-

ing criteria for BN or EDNOS-BN. The relative

lack of previous data on illness perceptions in

this patient group makes the study an important

addition to this area of research. The large sam-

ple size and availability of clinical information

(illness duration, symptom levels etc.) are alsostrengths. An important limitation is the use of a

clinical sample of treatment-seeking individu-

als. This group may not be representative of

many individuals with BN, as a large propor-

tion of this population do not seek treatment for

their eating disorder (Kendler et al., 1991).

Previous research suggests that poor recogni-

tion of eating disordered behaviours is associ-

ated with low treatment seeking in women

with bulimic-type EDs (Mond et al., 2006).

Therefore, we predict that individuals who seek

treatment for BN are likely to have a greater

understanding and awareness of their disorder,

and may also view their disorder as more ame-

nable to control or cure than those who do not

seek treatment.

Conclusion

It seems that illness perception in BN is broadly

similar to that found in groups of patients with

AN. Patients view their disorder as fairly

chronic, with serious negative consequences

and a high degree of related emotional distress.

Illness perceptions are related to clinical meas-

ures, such as symptom severity and anxiety levels.

These findings have implications for clinical

practice, in terms of identifying and targeting

factors that may hinder treatment progress.

Future extensions of this work could seek to

establish causality in the relationships between

illness perception and clinical variables, by

examining change in these measures over time.

The role of illness perceptions in recovery, and

ability of various interventions to alter these

perceptions, should also be considered.

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Appendix I. Sample items from the IPQ-R.

Subscale Item

Timeline duration My illness will last for a long time.

Timeline cyclical I go through cycles in which my illness gets better and worse.

Consequences My illness has major consequences on my life.

Personal control I have the power to influence my illness.

Treatment control My treatment can control my illness.Emotional representations When I think about my illness I get upset.Illness coherence My illness doesnt make any sense to me.

ilness perception

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