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RESEARCH ARTICLE

Exploring Quality of Life in the Eating Disorders


Bryony Bamford1,2* & Richard Sly1,2
1 2

St. Georges, University of London, UK South-west London and St. Georges NHS Trust, UK

Abstract Objective: The present study aimed to investigate the impact of Body Mass Index (BMI), duration of illness and severity of illness on quality of life within a sample of individuals in treatment for an eating disorder. In addition this study explored differences in specic areas of quality of life (Psychological, Physical/Cognitive, Work/School and Financial) according to specic eating disorder diagnoses. Method: Participants (N 156) were adults currently receiving treatment for an eating disorder. Eating disorder symptomatology and quality of life were assessed using self-report questionnaires. BMI, duration of illness and eating disorder diagnosis was obtained during a clinical interview. Results: Severity of the eating disorder and BMI were predictors of low quality of life. Duration of illness, contrary to clinical expectations was not a signicant predictor of poor quality of life. In terms of differences across diagnostic groups, individuals with a diagnosis of anorexia nervosa in this sample were found to have lower psychological and physical/cognitive quality of life than those with an EDNOS or BN diagnoses. Copyright # 2009 John Wiley & Sons, Ltd and Eating Disorders Association.

Keywords anorexia nervosa; bulimia nervosa; quality of life *Correspondence Dr Bryony Bamford, Department of Mental health, St. Georges university of London, Cranmer Terrace, Tooting, SW17 0RE, UK. Tel: 0208 725 5529, Fax: 0208725 3538. Email: bbamford@sgul.ac.uk

Published online 2 December 2009 in Wiley InterScience (www.interscience.wiley.com) DOI: 10.1002/erv.975

Introduction
Since the early 1980s interest in the quality of life of mental health patients has increased dramatically. Assessment of quality of life now forms an essential part of research protocols in therapeutic trials (Basu, 2004), is a core part of the assessment of severity of mental health disorders (Orley, Saxena & Herman, 1998, Mitchell, Hatsukami, Eckert & Pyle, 1985; Herzog, Norman, Rigotti & Pepose, 1985; 1986) and has become a focus for many psychosocial treatment interventions (McIntosh et al., 2005). Despite this important trend, the quality of life of eating disordered patients has still not been adequately studied in the literature (Engel, Adair, Las & Hayas et al., 2009; Abraham, Brown, & Boyd et al., 2006).

Quality of life is a concept that is difcult to dene, the most widely used denition to date however comes from the World Health Organisation (WHO) where it dened as being an individuals perception of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations, standards and concerns. Eating disorders have been shown to exert a profound impact across many domains of life, not least on areas such as work, nances, interpersonal relationships and social and role functioning (e.g. Mitchell et al., 1985; Herzog et al., 1996; 1985). All of these domains are considered central to the concept of quality of life (e.g. Basu, 2004; The WHOQOL Group, 1995, p.1405). However, until recently the focus of treatment outcome studies has
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Eur. Eat. Disorders Rev. 18 (2010) 147153 2009 John Wiley & Sons, Ltd and Eating Disorders Association.

Quality of Life and the Eating Disorders

B. Bamford and R. Sly

tended to be on the physiological and medical symptoms of the disorder rather than the psychosocial impact of eating disorders (Padierna, Quintana, Arostegui, Gonzalez, & Horcajo, 2000). In recognition of this, research has begun to investigate the quality of life of eating disorder patients compared to recovered or non-eating disorder patients. These studies have shown that eating disorder patients report considerably lower quality of life compared to non eating disorder controls (e.g. Acero, Lopez, Horcajo, Madrazo & Ecenarro, 2004; De la Rie, Noordenbos & van Furth, 2005; De la Rie, Noordenbos, Donker & Van Furth, 2007; Doll, Peterson & Stewart-Brown, 2005; Hay 2003; Hay & Mond, 2005; Mond, Hay, Rodgers, Owen & Beumont, 2005) and that even after treatment, eating disorder patients continue to report signicantly lower quality of life than those with no prior history (Padierna, Quintana, Arostegui, Gonzalez & Horcajo, 2002). There exists a clinical assumption that both the severity and chronicity of an eating disorder are likely to negatively impact the sufferers quality of life. Only one previous study has however shown that perception of quality of life decreases with increasing severity of an eating disorder (Padierna et al., 2000) and no studies have looked at the inuence of the chronicity of an eating disorder on quality of life. In relation to differences across diagnostic groups, studies have struggled to report consistent ndings. A small number of studies have suggested that those with restrictive anorexia report less subjective impairment than those with anorexia nervosa bingepurge subtype or those with bulimia (e.g. Doll et al., 2005; Mond et al., 2005; Padierna et al., 2000). Previous studies have also attempted to explore the impact of specic eating disorder features on QoL. Again using generic quality of life scales, binge eating (Hay & Mond, 2005); extreme weight control (Mond et al., 2005) and purging behaviours (Gonzalez-Pinto et al., 2004) have all been found to exert a greater impact on QoL. The major limitation of all of these studies, however, is that they have tended to use generic quality of life measures, which have been criticised for their lack of sensitivity and responsiveness in eating disorder patients (Adair, Marcoux, & Ewashen et al., 2007; De la Rie et al., 2007; Fayers & Machin, 2000); Engel et al. (in press) have suggested that any differential impact on quality of life related to diagnostic or behavioural features may be better identied using a measure specically designed to assess QoL in an ED sample.
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More recently a number of eating disorder specic QOL scales have been developed (Abraham et al., 2006; Adair et al., 2007; Engel, Wittrock, & Crosby et al., 2006; Las Hayas et al., 2006). These measures have supported the ndings found using generic measures of QoL that eating disorders negatively impact an individuals QoL but have not been used, as yet, to explore how different aspects of ED pathology, including chronicity, symptomology, severity and BMI, may relate to QoL. The eating disorders quality of life instrument (EDQOL), (Engel et al., 2006) was developed as a conditionspecic quality of life instrument designed to minimise response bias attributable to ego-syntonicity in the eating disorders, to allow for both standard and individualised assessment of quality of life. Preliminary investigations regarding quality of life in eating disorders using this measure suggests that it is more sensitive than previously used generic quality of life measures in assessing the quality of life of eating disorder patients. As yet, this measure has only been used in one sample which consisted mainly of collegeaged females (n 327) and a smaller number (n 155) of self reported eating disorder patients engaged in other research trials. To the best of our knowledge this scale has not been used in a more severe sample of eating disorder patients. As such, this is the only study using this ED specic QoL measure, to assess the quality of life of eating disorder individuals across a number of treatment settings (inpatient, day patient and outpatient). In summary, despite the increasing importance of investigating quality of life in medical and psychological research, there is still a striking lack of research exploring the relationship between such factors as BMI, duration and severity of illness and quality of life. As such, the specic aims of this study were 1) to investigate the impact of BMI, duration of illness and severity of illness on quality of life (as measured by the EDQOL) and 2) to explore differences across quality of life subscales according to specic eating disorder diagnoses.

Method
Participants
Participants were 148 females and 8 males recruited from a national eating disorder clinic at assessment. The mean age of participants was 26.7 years (range 1858, SD 7.7). Participants met DSM-IV diagnostic criteria

Eur. Eat. Disorders Rev. 18 (2010) 147153 2009 John Wiley & Sons, Ltd and Eating Disorders Association.

B. Bamford and R. Sly

Quality of Life and the Eating Disorders

for anorexia nervosa restrictive subtype (n 56, 36%), anorexia nervosa binge purge subtype (n 24, 15%), bulimia nervosa (n 40, 26%) or eating disorder not otherwise specied (n 36, 23%). Participants were diagnosed by experienced ED clinicians using a semistructured clinical interview routinely used in clinical practice. This interview is based on the Eating Disorder Examination (Fairburn & Cooper, 1993) which has previously been validated as a diagnostic eating disorder tool. The majority of patients were white (n 142, 91%). Of the sample, 30% (n 46) were recruited from the inpatient service, 8% (n 12) from the day patient service and 63% (n 98) from the outpatient service. The high proportion of AN participants seen in this sample is attributable to the relatively large number of participants recruited from the inpatient unit. The current research was reviewed by the Wandsworth LREC.

Measures
Measures were completed as part of a routine service evaluation within 1 week of the initial assessment or within 1 week of admission in the case of inpatient or day-patient treatments. All measures were given to participants in the form of a questionnaire pack which took approximately 30 minutes to complete.

Cognitive, Work/School and Financial). The EDQOL uses a 5-point coding scale to explore the extent to which participants view their eating disorder as affecting each of these four areas of their quality of life. Scores range from never affecting their QoL (0) to always affecting their QoL (4). A higher number on the scale indicates a lower quality of life. The psychological subscales refer to participants thoughts and feelings about themselves or others e.g. how often has your eating/weight made you feel worse about yourself. The physical/cognitive subscale refers to physical sensations or altered cognition, e.g. how often has your eating/ weight reduced your ability to concentrate. The nancial subscale refers to the participants nancial status e.g how often has your eating/weight resulted in signicant nancial debt. The work/school subscale refers to participants performance at work or school e.g. how often has your eating/weight resulted in reduced hours at work. Scores on each of the subscales can be combined to produce an overall QoL score. In the development of the EDQOL, (Engel et al., 2006), good convergent and discriminant validity, and test-retest reliability of the measure was displayed. A standard demographic and treatment history questionnaire was used to obtain demographic information. Particpants clinical notes were also reviewed to obtain information regarding duration of illness and accurate weight and height readings.

Eating disorders examination questionnaire


The Eating disorders examination questionnaire (EDE-q) (Fairburn and Beglin, 1994) is a 33-item self-report measure of eating pathology, which uses a 7-point coding scale. Based on the EDE (Fairburn & Cooper, 1993), the EDE-q consists of four subscales (Restraint, Eating Concern, Shape Concern and Weight Concern) across which strong levels of internal consistency and test-retest reliability have been demonstrated (Luce and Crowther, 1999). A higher number on the scale indicates greater severity or presence of a feature.

Statistical analyses
All statistical analyses were conducted using SPSS version 14.0 (SPSS, Chicago). Stepwise multiple regression analysis was used to examine whether duration of illness, BMI, diagnosis and eating disorder severity (as measured by the EDE-q) predict quality of life as measured by the EDQOL. Univariate analyses of variance (ANOVA) with Bonferroni post hoc tests were conducted to examine differences in scores between diagnostic groups.

Eating disorders quality of life instrument


The EDQOL (Engel et al., 2006) is a newly developed scale designed to assess quality of life in eating disorder patients. The EDQOL is a 25-item self-report measure comprising four subscales (Psychological, Physical/

Results
Descriptive statistics
Descriptive statistics for possible predicting variables of quality of life are presented in Table 1. Scale scores (for EDE-q and EDQOL) are calculated by averaging the items on each scale.
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Eur. Eat. Disorders Rev. 18 (2010) 147153 2009 John Wiley & Sons, Ltd and Eating Disorders Association.

Quality of Life and the Eating Disorders Table 1 Descriptive statistics for possible predictor variables of EDQOL and EDQOL subscale scores Eating disorder diagnosis Characteristic Duration of ED, y, mean (SD) BMI, mean (SD) EDE-q score, mean (SD) Restraint Eating concern Shape concern Weight concern Global EDQOL score, mean (SD) Psychological Physical/cognitive Financial Work/school Global AN-R (n 56) 9.39 (8.61) 13.88 (1.60) 3.84 3.21 4.43 3.98 3.87 (1.55) (1.46) (1.34) (1.48) (1.28) AN-BP (n 24) 10.75 (5.14) 14.84 (1.40) 3.41 3.17 4.21 3.88 3.54 2.54 1.83 0.67 0.79 1.54 (2.12) (1.68) (1.72) (1.62) (1.58) (0.99) (0.91) (0.93) (0.96) (0.71) BN (n 40) 8.83 (4.97) 22.39 (2.63) 3.89 3.59 4.98 4.42 4.22 2.95 2.22 0.68 1.21 1.84 (1.74) (1.57) (1.38) (1.49) (1.37) (0.80) (0.95) (1.00) (1.27) (0.77) EDNOS (n 36) 7.50 (5.16) 22.04 (5.12) 4.28 4.02 4.97 4.68 4.52 3.11 2.36 0.79 1.38 2.07 (1.52) (1.18) (1.12) (1.23) (1.02) (0.66) (0.91) (1.08) (1.44) (0.81)

B. Bamford and R. Sly

All diagnoses (n 156) 9.02 (6.60) 18.09 (5.03) 3.89 3.49 4.66 4.23 4.06 2.80 2.09 0.66 1.02 1.78 (1.69) (1.49) (1.39) (1.47) (1.33) (0.78) (0.87) (0.93 (1.18) (0.76)

2.62 (0.66) 1.92 (0.70) 0.54 (0.76) 0.82 (0.99) 1.65(0.68)

Global and subscale EDQOL scores for the whole sample and for specic ED diagnoses can also be seen in Table 1. Scores across all subscales were higher (indicating poorer QoL) than in the eating disorder and non-eating disordered samples assessed by Engel et al. (2006) when developing the scale. No signicant differences in age F (3,155) 1.38, p .251, duration of illness F (3,155) 1.26, p .289, or treatment history F (3,155) 0.97, p .407, were found across diagnostic groups. As expected, a signicant difference in BMI was found between diagnostic groups F(3,152) 94.028, p < .0005. The EDQOL has not as yet been validated in a male sample however men were included in the current study. The relationship found did not change on removal of the male participants and as such they were included in the nal analysis.

Differences between diagnostic groups


ANOVAs were used to examine the differences in quality of life between diagnoses across the four EDQOL subscales. Signicant effects of diagnosis were revealed on the Psychological, F(3,152) 4.361, p .006, and Physical/Cognitive, F(3,152) 2.805, p .042, subscales. There was no signicant effect of diagnosis on the Work or Financial subscales. Bonferroni post hoc tests revealed that EDNOS patients had signicantly lower Psychological subscale scores (and hence higher quality of life) to those diagnosed with AN-BP ( p .030) and AN-R ( p .023). In the Physical/Cognitive subscale, despite the overall signicant difference between groups, post hoc analyses indicate differences approaching signicance between EDNOS and AN patients. EDNOS participants had higher quality of life than AN-BP ( p 0.135) and AN-R ( p .133) participants. No further signicant ndings were found.

Predictors of QOL: Multiple regression analysis


Multiple regression analysis was conducted to explore possible signicant predictors of EDQOL. Using stepwise multiple regression, a signicant model emerged: F (2,153) 29.87, p < .0005. The model explains 27.1% of the variance (Adjusted R2 .271). Two predictor variables were included in the model: BMI (B 0.26, standardised b 0.17, p .015), and ED severity as derived from the Global EDEq scores (B 0.27, standardised b 0.47, p < 0.0005). Diagnosis and duration of illness were excluded from the nal model as they were not signicant predicting factors of EDQOL score.
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Discussion
The quality of life of eating disorder patients has become an increasingly important dimension both in terms of treatment outcome as well as for understanding the full impact of the illness on sufferers. As this study is one of the rst to explore patient perceived quality of life using this ED specic QoL measure within a population of eating disorder patients it provides a useful baseline of EDQOL scores for eating disordered patients who are at the point of entering treatment for their illness. In this study, severity of the eating disorder

Eur. Eat. Disorders Rev. 18 (2010) 147153 2009 John Wiley & Sons, Ltd and Eating Disorders Association.

B. Bamford and R. Sly

Quality of Life and the Eating Disorders

as measured by the EDEq, and BMI were predictors of low quality of life. Duration of illness, contrary to clinical expectations was not a signicant predictor of poor quality of life. Contrary to previous ndings, individuals with an AN diagnosis in this sample were found to have lower psychological and physical/ cognitive quality of life than those with an EDNOS or BN diagnoses.

Quality of life in the current sample


Scores across all subscales of the measure were higher than in the previous eating disorder sample assessed by Engel et al., 2006. This is likely to reect the nature of the eating disorder sample assessed in our study who were all at the start of treatment and who, due to the nature of the service (having a national inpatient unit) were likely to be a more severe population than previously assessed. In line with previous ndings (Engel et al., 2006) psychosocial deterioration was most evident in the areas of psychological and physical/ cognitive quality of life. Financial and work related quality of life was less affected by the presence of an eating disorder. As suggested by Hay and Mond, 2005, this may reect the ability of ED patients to continue with daily activities even at highly emaciated body weights. Alternatively, this nding may reect a difference in the values held by eating disorder patients compared to the team of clinicians responsible for creating the scale. Eating disorder patients may not place the same values on work and nancial quality of life and as such may not be concerned by any impact their illness may have on these areas. Further research would be justied in this area.

QoL subscales between AN diagnoses and EDNOS, this nding may be due to the difference in BMI between these groups. Although this nding needs replication, it suggests that BMI may have a greater impact than the specic behavioural features related to diagnosis which previous authors have investigated (e.g. Doll et al., 2005; Mond et al., 2005; Padierna et al., 2000). As multiple regression does not aim to imply causality, we are unable to determine whether the model tested reveals predictors of, or moderators of QoL. The specics of this relationship will require further investigation in future research. The current model explained 28% of the variance. Quality of life is a complex construct, clearly affected by a number of social, psychological and environmental factors. The current research looked primarily at clinical factors inuencing quality of life however it is likely that a number of personal factors including motivation, perceived support and the ego syntonic function of eating disorder symptoms may also be involved in this relationship. Further research would be useful in determining other factors affecting the variance seen in QoL scores.

Quality of life and chronicity


Contrary to clinical expectation, a longer duration of illness did not result in a lower quality of life. This nding can be seen to be in line with the opinion of previous authors who have suggested that the global functioning of these patients does not decrease even with the attenuation of eating symptomatology over time (e.g. Sullivan, Bulik, Fear & Pickering, 1998). Health psychology models of adaptation to chronic illness may suggest that these patients adapt to their decreased functioning by changing their values or expectations, and nd ways to carry on with their daily functioning despite the impairment of the disorder. This change in values and expectations has been termed response shift (Schwartz & Sprangers, 1999; Sprangers & Schwartz, 1999, Wilson, 1999). When applied to physical illness, response shift can be seen as a desirable outcome of adaptation. In mental health, however, this shift is likely to contribute to the low levels of motivation seen in chronic patients and possibly to their often-staunch denial of the impact of their disorder. This nding highlights the importance of using motivational approaches with patients with chronic eating disorders. Clinicians should spend sufcient
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Predictors of quality of life


The nding that increased severity of illness results in a lower quality of life is in line with previous ndings within eating disorder samples when using a generic quality of life measure (e.g. Padierna et al., 2000). Studies have not as yet specically explored the impact of BMI on quality of life. In this study BMI emerged as a signicant predictor of QoL with lower BMI contributing to a lower self reported QoL. Contrary to the expectations of previous authors (Engel et al., in press), specic diagnosis did not emerge as a signicant predictor of QoL. Even though signicant differences were found on psychological and physical/cognitive

Eur. Eat. Disorders Rev. 18 (2010) 147153 2009 John Wiley & Sons, Ltd and Eating Disorders Association.

Quality of Life and the Eating Disorders

B. Bamford and R. Sly

time exploring with their patients ways in which their values or expectations may have changed over time and should try to enhance their patients understanding of the negative impact of their eating disorder, which the patient may no longer be aware of. Despite the strengths of this study there are a number of limitations which point towards a number of future research projects. Firstly, the sample exists primarily of young white females. Whilst this reects the demographics of the population generally referred to eating disorder services, future studies should aim to explore the impact of quality of life in a more diverse sample. Secondly the eld would benet from both longitudinal and qualitative approaches in addition to the crosssectional self-report data outlined here. Quality of life is a rich and complex concept (WHOQOL Group, 1995) and one on which the real impact of an illness may be difcult to grasp without such data. A longitudinal approach would help to answer questions regarding the true impact of an eating disorder over time. In addition, a qualitative, patient led approach may better serve to understand the patients perceptions of the impact of their illness by avoiding pre determined, value laden quality of life categories which may in fact be less important to the patients themselves. A qualitative approach may also better address issues of denial and false reporting which are very likely to reduce the reliability of self-report QoL scales in an eating disorder sample. Finally the impact of treatment on quality of life as well as the way in which changes in perception of quality of life impact treatment motivation and retention should be explored using the EDQOL. Given the move towards recovery led treatment in the eld of psychiatry in general (Anthony, 1993; Jacobson & Greenley, 2001) and more recently within the eating disorders eld, this would seem a useful, and as yet relatively unexplored, direction for future research. References
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