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Illness perception in bulimia nervosa

Hannah DeJong, Jessica Hillcoat, Sarah Perkins, Miriam Grover and Ulrike Schmidt J Health Psychol 2012 17: 399 originally published online 22 August 2011 DOI: 10.1177/1359105311416874 The online version of this article can be found at: http://hpq.sagepub.com/content/17/3/399

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

Article

Illness perception in bulimia nervosa

Hannah DeJong, Jessica Hillcoat, Sarah Perkins, Miriam Grover and Ulrike Schmidt

Journal of Health Psychology 17(3) 399408 The Author(s) 2011 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1359105311416874 hpq.sagepub.com

Abstract
The 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

Illness perception refers to the cognitive representations a person has about their illness. 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 illness perception: identity, timeline, consequences, causes and cure. Identity refers to representations 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 component 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 for causing the illness. Cure is sometimes also labelled as controllability, and involves cognitions about the extent to which the illness is

amenable to control or cure, either through ones own personal efforts or through treatment. 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 several important outcomes, such as coping, functioning and emotional distress. Patients who perceive 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,
Institute of Psychiatry, Kings College London, UK Corresponding author: Hannah DeJong, Institute of Psychiatry, Box P059, De Crespigny Park, London SE5 8AF, UK. Email: hannah.dejong@kcl.ac.uk

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400 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 targeting 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 control, emotional representations, illness coherence 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 representations (Moss-Morris et al., 2002). Illness coherence 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 illness perceptions, such as perceived chronicity and

Journal of Health Psychology 17(3) 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 disorders 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 anorexia nervosa (AN) and also evaluated lay peoples 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 optimistic, rating the illness as less chronic and more amenable to control or treatment. Both groups endorsed primarily emotional and psychological causes. Stockford et al. (2007) used a modified 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 negative consequences predicting increased readiness to change. Three studies by a Spanish group (Quiles and Terol, 2010, Quiles Marcos et al., 2007; 2009) have used a translated and modified version of the IPQ-R in mixed ED groups and also the relatives of these patients. IPQ-R scores were related to emotional adjustment and psychosocial adaptation, levels of distress, depression 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, experienced more psychological distress. Conversely, patients who perceived their illness to be subject to a high degree of personal control and curability had lower levels of depression and anxiety. There was also a positive relationship

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DeJong et al. 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 duration of illness.

401 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 written 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 here were taken at baseline. Clinical interviews were used to determine diagnosis and duration of illness. 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 emotional representations of their illness. It consists of nine subscales: identity, timeline-duration, timeline-cyclical, consequences, personal control, treatment control, emotional representations, illness coherence and causes. The questionnaire has good internal reliability, discriminant validity and predictive validity (Moss-Morris et al., 2002). Illness identity is measured by the number of symptoms that participants report having experienced 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 maximum 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 percentage of participants who either agreed or strongly agreed that each item played a causal

Method Participants
Participants were recruited to take part in a treatment study designed to assess the effectiveness of a CD-ROM based cognitive behavioural intervention for BN and EDNOS-BN (Schmidt et al., 2008). Of the 97 participants in the CD-ROM study, 78 completed measures 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 during 20032006. Inclusion criteria for the study were a diagnosis 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 criteria were insufficient knowledge of English or poor literacy skills, severe learning disability, anorexia nervosa, severe depression, acute suicidality and alcohol or substance dependence.

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402 role in their illness. The remaining seven subscales 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).

Journal of Health Psychology 17(3)

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 were used throughout the analysis. Spearmans rho correlation coefficients were used to investigate Hospital Anxiety and Depression Scale (HADS). relationships between the IPQ-R and clinical The HADS is a 14-item scale that measures variables and among the IPQ-R subscales. anxiety and depression (Zigmond and Snaith, 1983). This scale has been used with a wide variety of patient groups, and gives clinically Results meaningful results when used as a psychologi- Participant characteristics cal screening tool or in correlational studies Out of the 78 participants, 49 were diagnosed (Herrmann, 1997). with bulimia nervosa and 29 were diagnosed Eating Disorder Examination (EDE). The EDE with EDNOS-BN. Four males and 74 females (Cooper and Fairburn, 1987) is a reliable participated in the study. Clinical and demointerview-based assessment of bulimic symp- graphic characteristics of the sample are shown tomatology with good discriminant validity in Table 1. Median values for both HADS anxiety and satisfactory internal reliability (Cooper and depression were above the clinical cut-off et al., 1989). It measures frequency of physi- for probable anxiety and depression (Zigmond cal symptoms (bingeing, self-induced vomit- and Snaith, 1983). ing, laxative use, diuretic use and excessive exercise), as well as thoughts and attitudes Illness perception questionnaire related to eating disorders. Four subscale scores are generated: dietary restraint, eating All subscales of the IPQ-R showed good interconcern, shape concern and weight concern. nal reliability. Cronbachs alpha values ranged The mean of these scores can be given as a from 0.73 (consequence subscale) to 0.90 (illglobal indicator of eating disorder pathology. ness coherence subscale).
Table 1. Clinical and demographic characteristics. Sample characteristic Age (years) Duration of illness (years) BMI EDE dietary restraint EDE eating concern EDE shape concern EDE weight concern EDE global score HADS anxiety HADS depression Median 26.0 7.0 21.70 3.40 2.80 4.38 3.60 3.41 12.0 11.0 Inter-quartile range 22 31 3 12.50 20.50 24.60 2.75 4.40 1.60 3.85 3.12 5.19 2.40 4.60 2.60 4.36 11.0 13.0 9.0 12.0 Range 17 51 0.5 32.0 18.83 42.35 0.2 5.8 0.0 5.75 0.0 6.0 0.4 6.0 0.35 5.47 4 16 4 16

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

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DeJong et al. Identity. All symptoms were endorsed by at least one participant as being related to their illness 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: timelinechronic median = 3.33, IQR = 0.83; timelinecyclical 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 coherence median = 3.25, IQR = 1.4; emotional representations median = 4.08, IQR = 0.71.
Table 2. Causal attributions about bulimia nervosa. Proposed cause Emotional state Own behaviour Stress/worry Mental attitude Diet/eating habits Personality Family problems and worries Overwork Alcohol Ageing Smoking Chance/bad luck Poor medical care in my past Accident/injury Altered immunity Germ/virus Pollution in environment Percentage of participants who agree or strongly agree (%) 87.3 79.5 78.2 75.7 75.7 65.4 55.1 34.6 16.6 15.4 11.6 9.0 6.4 5.1 2.6 2.6 0

403 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 positively correlated with identity [r = .370, p = .010], consequences [r = .355, p = .002] and illness 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 correlated 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

Mean score (SD) 4.4 (0.67) 4.1 (0.98) 4.0 (0.95) 4.1 (0.98) 4.2 (0.98) 3.7 (1.20) 3.6 (1.21) 2.8 (1.34) 2.0 (1.24) 2.1 (1.28) 1.8 (1.12) 1.9 (1.03) 1.8 (0.98) 1.6 (0.84) 1.8 (0.98) 1.39 (0.74) 1.37 (0.51)

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404 investigated. BMI was negatively correlated with perceived illness identity, personal control and negative consequences. Illness duration was negatively correlated with perceived treatment control. Anxiety was positively correlated with perceived chronicity, negative consequences, emotional representations and illness coherence. All subscales of the EDE and the global EDE score were positively correlated with emotional representations. The EDE dietary restraint subscale was positively correlated with illness identity, while the EDE shape concern subscale was negatively correlated with perceived personal control (see Table 3).

Journal of Health Psychology 17(3) 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 symptoms associated with BN. However, the scores reported here are similar to those found by Quiles Marcos et al. (2007) across all ED diagnoses, using an adapted version of the IPQ-R. In the present study, participants primarily attributed their eating disorders to psychological 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 nervosa 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 partially be attributable to the wording of the IPQR. However, given that participants strongly endorsed psychological and self-inflicted disorder explanations, we might hypothesize that they tend to underestimate the role of biological factors factors that may be less stigmatising 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 people with AN when given information about the biological and genetic causes of AN, than when given information about sociocultural influences (Crisafulli et al., 2008). Therefore, educating patients about the role of genetic and biological variables in the onset of eating disorders may be beneficial.

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 participants 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, with the addition of more symptoms that are related

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DeJong et al.
Table 3. Correlations between IPQ-R subscales and clinical measures. Clinical measure IPQ-R subscale

405

Illness Timeline Timeline Treatment Personal Consequences Emotional Illness identity chronic cyclical control control representations coherence .078 .194 .011 .028 .027 .186 .202 .157 .068 .119 .188 .259* .202 .186 .039 .092 .064 .100 .034 .067 .139 .186 .196 .176 .450** .034 .337** .270* .333** .248* .351** .014 .057 .280** .094 .033 .043 .123 .097 .083

Illness duration BMI HADS anxiety score HADS depression score EDE dietary restraint EDE eating concern EDE shape concern EDE weight concern EDE global score

.301* .123 .218 .262* .076 .002

.276* .354** .034 .313** .056 .049 .104 .029 .045 .038

.298* .186 .238 .267 .163 .279 .076 .050 .122 .036

.237* .007 .139 .175 .015 .013

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

There were several relationships found between different aspects of illness perception. A strong illness identity, perceived negative consequences and a coherent illness understanding were all associated with greater emotional responses to the disorder. It seems likely that experiencing more symptoms and negative consequences related to ones disorder contributes to a more negative affective response. Personal and treatment control were also related, implying that personal management of symptoms and any treatment provided may be seen as complementing one another. Surprisingly, participants who viewed their disorder as having serious consequences were more likely to perceive treatment as being beneficial. It may be the case that this surprising relationship reflects perceived need for specialist treatment, or ease of accessing treatment those who view their eating disorder as having severe consequences may be more likely to

both recognize a need for professional help and be offered this. Illness perceptions were also related to several 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 having 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 distress (Quiles Marcos et al., 2007). Low BMI was associated with high illness identity and increased negative consequences,

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406 but also with greater perceived personal control. It may be that patients who are better able to limit the frequency of their binge episodes, or to maintain a high level of dietary restraint between binge episodes, are likely to both maintain a lower BMI and perceive themselves as having a high degree of control over their eating behaviours. A high degree of dietary 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 consequences and why they endorse experiencing more physical symptoms related to their disorder (ie have a strong illness identity). Interestingly, longer illness duration was associated 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 implications, as patient expectations have been demonstrated 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 personal control also has clinical implications, indicating a possible need for a stronger focus on these body shape concerns in treatment, aimed at increasing patients perceived ability to manage these concerns.

Journal of Health Psychology 17(3) clinical sample of treatment-seeking individuals. This group may not be representative of many individuals with BN, as a large proportion of this population do not seek treatment for their eating disorder (Kendler et al., 1991). Previous research suggests that poor recognition of eating disordered behaviours is associated 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 amenable 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 measures, 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. References
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Strengths and limitations

This study extends previous findings in AN and mixed ED samples to a group of patients meeting 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 sample size and availability of clinical information (illness duration, symptom levels etc.) are also strengths. An important limitation is the use of a

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Appendix I. Sample items from the IPQ-R.

Subscale Timeline duration Timeline cyclical Consequences Personal control Treatment control Emotional representations Illness coherence Item My illness will last for a long time. I go through cycles in which my illness gets better and worse. My illness has major consequences on my life. I have the power to influence my illness. My treatment can control my illness. When I think about my illness I get upset. My illness doesnt make any sense to me.

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