1020102 ANP ANZJP ArticlesHamilton et al.

Research

Australian & New Zealand Journal of Psychiatry

Understanding treatment delay: 2022, Vol. 56(3) 248­–259

https://doi.org/10.1177/00048674211020102
DOI: 10.1177/00048674211020102

Perceived barriers preventing © The Royal Australian and

New Zealand College of Psychiatrists 2021

treatment-seeking for eating disorders Article reuse guidelines:

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Amber Hamilton1 , Deborah Mitchison2,3,4, Christopher Basten4,

Susan Byrne5,6, Mandy Goldstein4,7, Phillipa Hay2,8,9 , Gabriella Heruc2,10,
Christopher Thornton4,11 and Stephen Touyz1

Abstract
Objective: Only a small proportion of individuals with an eating disorder will receive targeted treatment for their
illness. The aim of this study was to examine the length of delay to treatment-seeking and determine the barriers pre-
venting earlier access and utilisation of eating disorder treatment for each diagnostic group – anorexia nervosa, bulimia
nervosa, binge eating disorder and other specified feeding or eating disorder.
Method: Participants were recruited as part of the TrEAT multi-phase consortium study. One hundred and nineteen
Australians (13–60 years; 96.9% female) with eating disorders currently accessing outpatient treatment for their illness
completed an online survey comprised of self-report measures of eating disorder severity, treatment delay and per-
ceived barriers to treatment-seeking. The treating clinician for each participant also provided additional information (e.g.
body mass index and diagnosis).
Results: Overall, the average length of delay between onset of eating disorder symptoms and treatment-seeking was
5.28 years. Controlling for age, latency to treatment-seeking was significantly longer for individuals with bulimia nervosa
and binge eating disorder compared to anorexia nervosa. However, when perceived barriers to treatment-seeking were
investigated, there were no significant differences between the diagnostic groups in regard to the perceived barriers they
experienced. Stigma was rated as the most impactful barrier for each diagnostic group.
Conclusion: Findings suggest that individuals with eating disorders face substantial delays in accessing appropriate treat-
ment and that latency to treatment-seeking is often magnified for counter-stereotypical eating disorder presentations.
Further research is required to investigate other factors contributing to this delay.

Keywords
Eating disorders, barriers, treatment-seeking

1
School of Psychology, The University of Sydney, Sydney, NSW, Australia
2
Translational Health Research Institute, School of Medicine, Western Sydney University, Sydney, NSW, Australia
3
Centre for Emotional Health, Department of Psychology, Macquarie University, Sydney, NSW, Australia
4
Department of Psychology, Macquarie University, Sydney, NSW, Australia
5
School of Psychology, University of Western Australia, Perth, WA, Australia
6
The Swan Centre, Perth, WA, Australia
7
Mandy Goldstein Psychology, Sydney, NSW, Australia
8
Wesley Hospital Eating Disorder Day Program, Sydney, NSW, Australia
9
Camden and Campbelltown Hospital, SWSLHD, Campbelltown, NSW, Australia
10
Appetite for Change, Sydney, NSW, Australia
11
The Redleaf Practice, Sydney, NSW, Australia

Corresponding author:
Amber Hamilton, School of Psychology, The University of Sydney, Sydney, NSW 2006, Australia.
Email: [email protected]

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Hamilton et al. 249

Eating disorders (EDs) are severe and often chronic psy- AN is associated with severe and often visible physical health
chological illnesses that are associated with long-term men- impairments (e.g. emaciation) and is the only ED character-
tal and physical complications and poor quality of life ised by an underweight status, and BN is unique in requiring
(Hoek, 2016; Klump et al., 2009; Van Hoeken & Hoek, both recurrent binge eating and compensatory behaviours for
2020). Individuals with EDs have significantly higher mor- a diagnosis (American Psychiatric Association [APA], 2013).
tality rates compared to the general population, and ano- Both BN and BED are often associated with a high body mass
rexia nervosa (AN) in particular has the highest lifetime index (BMI), adding to the complexity of differential diagno-
mortality rate of any non-substance use psychiatric disorder sis. It is therefore possible that the individuals suffering from
(Arcelus et al., 2011; Steinhausen, 2002). In Australia, the these distinct diagnoses may face different as well as similar
estimated prevalence of any Diagnostic and Statistical barriers when seeking treatment.
Manual of Mental Disorders, 5th Edition (DSM-5) ED in A review of initial treatment-seeking for EDs found that
adults is approximately 16% (Hay et al., 2015, 2017). EDs several ED-related variables were associated with increased
have been associated with significantly impaired health- treatment-seeking, including higher levels of ED pathol-
related quality of life when compared with both the general ogy, ED-related distress and ED-related physical health
population (Agh et al., 2016; Van Hoeken & Hoek, 2020) impairments (Regan et al., 2017). Other identified factors
and other psychiatric illnesses (Jenkins et al., 2011). And that significantly increase treatment-seeking include greater
the economic burden of EDs is also substantial due to high psychological distress, poorer psychosocial functioning,
rates of emergency department visits, hospitalisation and lower mental health–related quality of life and lower over-
outpatient care (Agh et al., 2016). valuation of weight/shape (Fatt et al., 2020; Thapilyal et al.,
Despite the severity of EDs, they often go undetected 2018). Historically, it has been believed that gender also
and subsequently untreated in the community (Hudson et significantly impacts treatment-seeking for EDs; however,
al., 2007). It is estimated that only 19–36% of individuals emerging research shows that functional health impair-
with an ED will receive treatment (Hart et al., 2011), and of ments and other ED-related symptoms are stronger predic-
the individuals who do receive treatment, only 35–40% tors of ED-specific treatment-seeking than gender
will receive targeted treatment for their ED (Mond et al., (Thapilyal et al., 2020). ED type and symptoms were also
2007; Noordenbos et al., 2002). Mond et al. (2007) found associated with increased treatment-seeking (Regan et al.,
that women with bulimia nervosa (BN) rarely received 2017). In the adolescent population, individuals with AN
treatment for their ED; instead, they commonly received and BN were 2.4 and 1.9 times more likely to seek treat-
treatment for weight loss or a general mental health prob- ment than adolescents with BED (Forrest et al., 2017).
lem. Furthermore, there is often a substantial delay between Moreover, ED behaviours (e.g. restriction and purging) and
the onset of symptoms and eventual treatment access. For more severe ED-related impairment were both associated
EDs, the average delay is estimated to be approximately with greater treatment-seeking (Cachelin et al., 2006; Hart
2.5 years for individuals with AN, 4.4 years for individuals et al., 2011). The impact of behaviours, such as self-induced
with BN and 5.6 years for individuals with binge eating dis- purging, and other forms of restriction are often more visi-
order (BED; Austin et al., 2020). Understanding the cause ble, such as weight loss and dermatologic symptoms
of this delay could result in earlier intervention and more (Strumia, 2006), and have more severe physiological con-
positive treatment outcomes (e.g. reduced illness duration, sequences like arrhythmia or hypotension (Forney et al.,
less need for intensive treatments) and inevitably reduce 2016) that may be more easily identified by the individual,
costs to the individual and the community. A recent system- family, friends or health professionals. It has been shown
atic review by Ali et al. (2017) identified a scarcity of quan- that individuals with counter-stereotypical ED presenta-
titative research investigating perceived barriers and tions (e.g. individuals with a higher BMI) are the least
facilitators to help-seeking for EDs. Of the 13 studies that likely to seek treatment (Forrest et al., 2017).
were found to address this issue, stigma and shame were Poor mental health literacy (especially a lack of knowl-
identified as key barriers in 11 of the studies, followed by edge about EDs) has been associated with individuals and
denial or failure to perceive the severity of the ED symp- their social networks overlooking or incorrectly identifying
toms (9 studies), practical barriers (8 studies) and negative ED behaviour, thus preventing individuals from seeking
attitudes towards treatment (7 studies). A similar systematic appropriate treatment (Hepworth and Paxton, 2007; Mond
review by Innes et al. (2017) endorsed the same barriers to et al., 2010). Furthermore, symptoms of lesser known EDs
treatment, and both reviews highlighted the distinct lack of (e.g. BED) often go unrecognised by healthcare profession-
high-quality research conducted in this area and significant als (Hart et al., 2011), and this can be due to underlying
heterogeneity in terms of study design, participant samples biases about the type of person who can suffer from an ED
and operationalisation of variables. (Becker et al., 2005; Mond et al., 2007).
The majority of research investigating barriers to treat- An American study of adolescent treatment-seeking
ment-seeking has focussed on EDs as a whole, yet there are found that only 20% of adolescents sought ED-specific
meaningful distinctions between ED diagnoses. For example, treatment (Forrest et al., 2017), and this was even lower in

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the Australian context with only 10% of adolescents seeking Only data from participants who provided responses
treatment (Fatt et al., 2020). While overall treatment-seek- to the relevant questionnaires for this study (i.e. latency
ing appears to be limited for individuals with EDs, people to treatment-seeking and perceived barriers to seeking
with counter-stereotypical ED presentations are even less and utilising ED treatment) and who had corresponding
likely to seek treatment (Bohrer et al., 2017), and when they data on diagnosis provided by their treating clinician
do present to primary care facilities, their ED symptoms were included. The diagnosis provided by the treating cli-
often go unrecognised (Hudson et al., 2007). Ali et al. (2020) nician was based on DSM-5 (APA, 2013) criteria and was
examined help-seeking in young adults with ED symptoma- used to classify participants into four main diagnostic
tology and found that 73% of participants did not believe groups: AN, BN, BED and OSFED. Individuals diag-
they needed help for their symptoms. Participants with AN nosed with unspecified feeding or eating disorder (UFED)
or BN were more likely to endorse previous negative beliefs were not included in the study as there was an insufficient
about the effectiveness of treatment and negative past expe- number of participants (n = 3) with this diagnosis to cre-
riences in treatment, whereas individuals with BED indi- ate a separate group. As such, they were excluded from
cated that they would more likely access friends for support the study.
rather than formal treatment options. Hence, using a sample
of individuals with varied ED diagnoses (e.g. AN, BN, BED
or OSFED [Other Specified Feeding and Eating Disorder]), Measures
this study aimed to examine (1) the length of time between The survey included self-reported socio-demographic
symptom onset and accessing ED-specific treatment provid- information, clinician-reported diagnostic information and
ers, and (2) the perceived barriers to accessing treatment self-report clinical questionnaires.
that each diagnostic group faced. Based on previous research
(e.g. Forrest et al., 2017; Regan et al., 2017; Thompson and
Socio-demographic and treatment history information. Partici-
Park, 2016), it was expected that the length of delay would
pants were asked to provide socio-demographic informa-
be longer for BN, BED and OSFED groups compared to the
tion such as age, gender, ED service and number of sessions
AN group. It was also hypothesised that there would be
attended.
some overlap in terms of the perceived barriers to treatment-
seeking. It is likely that all the diagnostic groups would
report barriers such as stigma and shame and practical barri- Clinician-reported information. Treating clinicians, all of
ers; however, it was predicted that barriers related to the rec- whom have had additional training and experience with
ognition of illness would be more prevalent for BN, BED EDs, were asked to report the participant’s weight, height
and OSFED compared to AN. and diagnosis. The clinicians made the diagnosis based on
clinical interview and reviewing responses to the Eating
Disorder Examination–Questionnaire version (EDE-Q;
Methods Fairburn and Beglin, 1994).
Participants
Data from 119 participants were included in this study ED symptoms. The EDE-Q (Fairburn and Beglin, 1994)
(94.96% female, mean age = 23.77 years, SD = 9.74). was used to assess the nature and frequency of symptoms of
Participants were recruited as part of a project called the eating pathology over the past 28 days. It comprised four
Clinical and Demographic Correlates of Eating Disorder subscales with 22 self-report items rated on a 7-point Lik-
Treatment-Seekers (known as the TrEAT Study), a multi- ert-type scale, ranging from 0 (no days, not at all or none of
phase consortium study investigating the characteristics of the time) to 6 (every day, markedly or every time). This
individuals referred to and receiving specialised treatment study only used the global score which was calculated by
for EDs. The TrEAT database included data collected from summing the subscale scores and dividing by the number of
seven private ED services across Sydney and Perth, Australia. subscales. Higher global scores indicated more severe ED
Participants (aged 12 or older) were recruited from the par- pathology. Cronbach’s alpha for the global score was 0.92.
ticipating ED services, where consent was formally obtained
from each participant or from their parents for those under Latency to treatment-seeking. Two self-report questions deter-
the age of 18 years. Participants completed an online survey mined the length of time between onset of ED symptomatol-
prior to or in conjunction with their first consultation, as part ogy and seeking treatment and the length of time between
of routine assessment, and were asked by administration seeking treatment and accessing treatment. The two questions
staff whether they wanted their de-identified data to be were as follows: ‘From the time of the onset of your eating
included in the TrEAT database for research purposes. The disorder symptoms, approximately how long did you wait to
treating clinician (psychologist, clinical psychologist or die- seek treatment?’ and ‘From the time you began to seek treat-
titian with specialised training or expertise in EDs) was then ment, how long did you have to wait to access it?’ Participant
asked to add information on weight, height and diagnosis. responses were converted to length of time in years.

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Hamilton et al. 251

Perceived barriers to seeking and accessing treatment. A Comparisons between diagnostic groups were con-
7-item measure was created to assess the impact of various ducted using an analysis of covariance (ANCOVA) (using
perceived barriers to seeking and accessing treatment for age as a covariate) to investigate the difference in length of
EDs. The measure was modified from the questionnaire time between the onset of ED symptoms and accessing
developed by Thompson and Park (2016) to be more appli- treatment. Similar tests were carried out to examine differ-
cable for the Australian context. The questionnaire com- ences between the ED subgroups in the length of time
prised a list of seven perceived barriers (cost, stigma, between seeking and accessing treatment. Post hoc
accessibility, social/work concerns, lack of ED knowledge Bonferroni-adjusted pairwise comparisons were conducted
in the general practitioner, personal lack of ED knowledge to investigate significant results.
and other). This included measures such as the following: A series of ANCOVAs were conducted to compare dif-
ferences in perceived barriers to accessing and utilising
Please rate how much stigma associated with eating disorders ED-specific treatment providers between the diagnostic
(e.g. did not feel comfortable disclosing my condition to my groups. Age was used as a covariate to account for pre-
GP, guilt or shame associated with my symptoms, fear of existing group differences as a function of age. Repeated-
judgement from family/social groups) affected your access or measures analyses of variance (ANOVAs) were used to
use of outpatient or inpatient eating disorder treatment.
investigate within-group differences in the rating of each
perceived barrier for each diagnostic group. Post hoc
Participants were asked to rate how impactful each barrier
Bonferroni-adjusted pairwise comparisons were used to
was on a 5-point Likert-type scale, ranging between 1 (no
further investigate significant test results and control for
impact at all), 3 (moderately impactful) and 5 (extremely
inflated Type 1 error rates.
impactful), with higher scores indicating greater impact on
help-seeking. Cronbach’s alpha was 0.64. The measure can
be found in Appendix 1. Results
Description of sample
Procedure
Participants were predominantly female (94.96%) aged
The TrEAT Study was approved by the Macquarie between 12 and 60 years with a mean age of 23.77 years
University Human Research Ethics Committee. Consenting (SD = 9.74). The diagnostic groups included in the study
participants completed an online survey using Qualtrics were AN (n = 37; 31.09%), BN (n = 26; 21.85%), BED
Survey Software prior to their first appointment. Following (n = 17; 14.29%) and OSFED (n = 39; 32.77%). The AN
the initial session, the treating clinician then completed a group comprised both the binge/purge subtype (n = 6;
section of the online questionnaire and added diagnostic 16.22%) and the restrictive subtype (n = 31; 83.78%), and
information. Participants were not provided any reimburse- the OSFED group included the following subgroups: atypi-
ment for their participation in this research. cal AN (n = 29; 74.36%), BN of low frequency and/or lim-
ited duration (n = 2; 5.13%), BED of low frequency and/or
limited duration (n = 5; 12.8%) and purging disorder (n = 4;
Statistical analysis
10.26%). Overall, the average length of time between
Descriptive statistics and all analyses were conducted using symptom onset and treatment-seeking for the whole sample
the IBM SPSS Statistics (version 25) program. Assumptions was 5.28 years (SD = 7.79) and between treatment-seeking
of parametric and non-parametric tests were assessed and and treatment access was 0.35 years (SD = 1.50).
corrected for (if violated). To measure the effect size for Demographic information for each diagnostic group and
significant interactions, partial eta squared (η2p ) was used; comparative statistics are presented in Table 1.
η2p = 0.01 is considered a small effect size, η2p = 0.06 is ANOVAs comparing the diagnostic groups on the demo-
considered a medium effect size and η2p = 0.14 is consid- graphic and study variables revealed that age, F(3) = 6.94,
ered a large effect size (Cohen, 1992). p < 0.001, η2p = 0.15, and BMI, F(3) = 56.03, p < .001,
First, parametric tests were conducted to examine η2p = 0.613, were significantly different between the
between-group (i.e. diagnostic subgroups) differences in groups. Post hoc pairwise comparisons revealed that partici-
the continuous demographic variables (age, BMI and pants with AN (M = 19.27, SD = 8.26) were significantly
EDE-Q global score). Significant F-tests were followed up younger than participants with BN (M = 28.96, SD = 10.16,
with Bonferroni-adjusted pairwise comparisons. Chi- p < 0.001, 95% confidence interval [CI] = [−15.93, −3.45])
square tests of independence were conducted to examine and BED (M = 27.53, SD = 10.24, p = 0.014, 95% CI =
between-group differences in the categorical demographic [−15.40, −1.12]). Furthermore, post hoc analyses revealed
variable (gender). Variables with significant between-group that the average BMI for the AN group (M = 18.28, SD = 2.84)
differences were considered as potential covariates in sub- was significantly lower than the BMI for the BN (M = 25.46,
sequent analyses. SD = 5.23, p < 0.001, 95% CI = [−10.45, −3.91]), BED

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Table 1. Demographics for all participants: mean age, gender, BMI and scores of eating disorder pathology for each diagnostic
group. (N = 119).

Diagnostic group mean (SD) Inferential statistics

AN (n = 37) BN (n = 26) BED (n = 17) OSFED (n = 39) F (or χ2) df p ηp2

Age (years) 19.27 (8.26) 28.96 (10.16) 27.53 (10.24) 22.95 (8.53) 6.940 3 <0.001* 0.150

Gender n (%female) 36 (97.30%) 25 (96.15%) 16 (94.12%) 36 (92.31%) (8.106)a 6 0.230 –

BMI (kg/m2) 18.26 (2.84) 25.46 (5.23) 35.72 (8.28) 22.07 (3.38) 56.030 3 <0.001* 0.613

EDE-Q global score 4.15 (1.36) 4.48 (0.81) 3.96 (1.08) 4.05 (1.09) 0.976 3 0.407 –

SD: standard deviation; AN: anorexia nervosa; BN: bulimia nervosa; BMI: body mass index; EDE-Q = Eating Disorder Examination–Questionnaire;
OSFED: Other Specified Feeding and Eating Disorder.
a
As gender is a categorical variable, a chi-square test was performed to compare the difference between diagnostic groups rather than an F-test.
*p < 0.05.

(M = 35.72, SD = 8.28, p < 0.001, 95% CI = [−21.26, mean scores ranged from 2.04 (SD = 1.12) to 4.04
−13.63]) and OSFED (M = 22.07, SD = 3.38, p < 0.001, (SD = 1.27); for the BED group, mean scores ranged from
95% CI = [−6.74, −0.85]) groups. The average BMI for the 1.94 (SD = 1.35) to 3.47 (SD = 1.23); and for the OSFED
BED group was significantly higher than AN, BN group, mean scores were between 2.05 (SD = 1.12) and 3.69
(p < 0.001, 95% CI = [6.18, 14.34]) and OSFED (p < 0.001, (SD = 1.22) (Figure 2). Despite some variability in the scores
95% CI = [9.82, 17.48]). As BMI is part of the DSM-5 for the different perceived barriers, no significant between-
diagnostic criteria, the difference in BMI scores varied as diagnostic group effects emerged, indicating that the impact
expected for the different diagnostic groups (i.e. AN was of each perceived barrier was similar across diagnoses.
the smallest and BED was the largest). It was therefore not Impact scores for each barrier were compared within
included as a covariate for further analyses. All subsequent each diagnostic group using repeated-measures ANOVAs.
analyses included age as a covariate to control for baseline Each ANOVA produced significant main effects that were
differences between the diagnostic groups. moderate to large in size, indicating differences in the
impact of specific barriers within each group (for AN, F(5,
Latency to access and utilisation 180) = 5.302, p < 0.001 η2p = 0.128; for BN, F(5, 115) =
of ED-specific providers 8.040, p < 0.001, η2p = 0.259; for BED, F(5, 80) = 3.771,
p = 0.004, η2p = 0.191; for OSFED, F(5, 190) = 9.364,
An ANCOVA conducted comparing length of time between
p < 0.001, η2p = 0.198). As can be seen in Table 2, for AN
symptom onset and treatment-seeking between diagnostic
and OSFED, stigma was rated as significantly more impact-
groups revealed a significant and moderately sized main
ful than all the other barriers (p < 0.001). For BN, stigma
effect of diagnostic group, F(3) = 5.071, p = .002,
was significantly more impactful than all other barriers
η2p = 0.118. Further investigation using Bonferroni-
apart from cost (p < 0.001), and for BED, stigma was only
corrected post hoc pairwise comparisons revealed that
rated as significantly more impactful than general practi-
when controlling for age, the participants diagnosed with
tioner’s (GP) lack of ED knowledge (p < 0.001).
BN (M = 8.40 years, SD = 8.28) and BED (M = 10.38 years,
SD = 12.80) waited for a significantly longer period of time
to seek treatment than participants with AN (M = 2.20, Discussion
SD = 4.44), p = 0.011, 95% CI = [1.22, 10.47] and p = 0.006, The results of this study revealed three important findings.
95% CI = [1.36, 14.79], respectively (Figure 1). First, as expected, individuals with BN and BED experi-
There were no significant differences in the length of enced a significantly longer delay from onset of symptoms
time between treatment-seeking and treatment access to ED-specific treatment-seeking when compared to AN.
between the ED subgroups,, F(3) = 0.793, p = 0.500. Second, contrary to the hypothesis, when barriers to treat-
ment-seeking were investigated, no significant differences
between the diagnostic groups were established that would
Perceived barriers to access and
account for the difference in latency to treatment-seeking.
utilisation of ED treatment
Third, for each diagnostic group, stigma was identified as
Overall, for the AN group the mean score for each barrier the most impactful barrier.
was between 2.14 (SD = 1.25) and 3.35 (SD = 1.42), indicat- As anticipated, individuals with a diagnosis of BN and
ing that scores on all barriers were considered to be within BED reported a substantial delay between the onset of their
the moderately impactful range. Similarly, for the BN group, ED symptoms and seeking ED-specific treatment, which is

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Hamilton et al. 253

Figure 1. Average length of delay (in years) between onset of ED symptoms and initial treatment-seeking.

Figure 2. Mean scores on the perceived barriers to seeking and accessing treatment questionnaire. Higher scores indicated
greater impact on help-seeking.

particularly concerning considering the greater prevalence propose that individuals with AN experience a delay of
of these disorders compared to AN. This finding supports approximately 2.20 years and that individuals with BN and
the current literature that suggests individuals with BN and BED are likely to experience average delays of 8.40 and
BED are less likely to seek treatment (e.g. Fatt et al., 2020; 10.38 years, respectively. This is somewhat aligned with
Forrest et al., 2017; Thompson and Park, 2016). Limited the average length of delay suggested by Austin et al.
research has looked at length of the delay for each specific (2020) after averaging the duration of untreated EDs across
diagnostic group. Cachelin et al. (2001) found that the aver- 14 studies.
age length of delay between symptom onset and first treat- Our findings have serious clinical implications. First, 2
ment contact was 3.6 years; however, they reported data on years is a substantial length of time for someone to experi-
a small sample with varied diagnoses. This was shorter than ence a severe and debilitating illness such as AN without
the average length of delay for the overall sample in this treatment, especially given the onset of illness is likely to
study (5.28 years). This study confirms that individuals occur during a pivotal developmental period and the medi-
with EDs face substantial delays to treatment. The results cal morbidity is so serious. Second, the length of delay

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Table 2. Summary of significant repeated-measures ANOVAs examining within-group differences in the impact of perceived
barriers to treatment-seeking.

Diagnosis F(df) p ηp2 Size Significant pairwise comparisons (α = 0.001)

AN F(5, 180) = 5.302 <0.001* 0.128 Medium Stigma > cost, inaccessible treatment, social/work issues, GP’s
lack of ED knowledge, personal lack of ED knowledge

BN F(5, 115) = 8.040 <0.001* 0.259 Large Stigma > inaccessible treatment, social/work issues, GP’s lack of
ED knowledge, personal lack of ED knowledge

BED F(5, 80) = 3.771 0.004 0.191 Large Stigma > GP’s lack of ED knowledge

OSFED F(5, 190) = 9.364 <0.001* 0.198 Large Stigma > cost, inaccessible treatment, social/work issues, GP’s
lack of ED knowledge, personal lack of ED knowledge

ANOVA: analysis of variance; AN: anorexia nervosa; ED: eating disorder; BED: binge eating disorder; OSFED: Other Specified Feeding and Eating
Disorder; GP: general practitioner.
Partial eta-squared (ηp2 ) value of approximately 0.010, 0.060 and 0.140 correspond to small, medium and large effect sizes, respectively.
*p < 0.001.

more than triples when the perceived severity of symptoms knowledge and personal lack of ED knowledge), no differ-
(namely, BMI within the normal weight range) is not as ence in barriers to treatment-seeking between the different
high, and this results in people at healthy body weights disorders was reported. This was surprising considering the
being less urgently encouraged to seek treatment or perhaps substantial difference in length of time to treatment-seeking
being able to conceal their ED for longer. between the groups. Previous research has suggested that
For individuals with AN, obvious signs of emaciation individuals with BED may have experienced barriers related
mean that their ED is more likely to be noticed by family to poor mental health literacy within the community and
and friends and/or picked up by healthcare professionals. healthcare settings (Hart et al., 2011; Hepworth and Paxton,
Furthermore, the younger presentation age of AN implies 2007; Mond et al., 2007); therefore, higher ratings for barri-
that it is often teens presenting to treatment. When these ers such as personal lack of ED knowledge and GP’s lack of
adolescents present to treatment, it is likely to be at the ED knowledge were expected. Similarly, individuals with
behest of their families, and this is a critical factor that BN were expected to endorse higher ratings of the stigma
could be shortening their latency to treatment-seeking. and shame barriers as well as the social/work issues as they
Other EDs often tend to be a lot less visible, and as our may have been more reluctant to disclose their ED symp-
findings suggest, significant levels of perceived stigma are toms to family and friends (Thompson and Park, 2016). As
likely to lead to greater secrecy of symptoms and delayed such, the findings from this study do not replicate these
treatment-seeking. results. Given this study only included six types of per-
The average length of delay for the OSFED group was ceived barriers, it is possible that some barriers are not
nearly 4 years, and this was not significantly different from included in the study (e.g. low motivation to change and
the other diagnostic groups. Interestingly, individuals with negative attitudes towards treatment (Ali et al., 2017)),
a diagnosis of OSFED made up the largest group in the which may have better accounted for the differences
study, and the group primarily comprised individuals diag- between the groups. It is equally probable that the grouping
nosed with atypical AN, defined in DSM-5 as an ED where of the perceived barriers was too broad to capture nuanced
‘all of the criteria for anorexia nervosa are met, except that differences in the experiences of the different diagnostic
despite significant weight loss, the individual’s weight is groups.
within or above the normal range’ (APA, 2013: 365). Unsurprisingly, stigma and shame related to ED symp-
Instances of restrictive EDs where individuals remain tomatology were perceived to be the most prominent bar-
within a normal weight range have dramatically increased riers to treatment-seeking across all diagnostic groups.
over the past few years, especially in the adolescent popula- While stigma and shame have been consistently identified
tion (Whitelaw et al., 2014). Considering the only differen- as key barriers to treatment-seeking (Cachelin et al., 2006;
tiating criterion between AN and atypical AN is the Reyes-Rodríguez et al., 2013), more recent literature has
individual’s BMI, it is unsurprising that the length of delay noted other barriers as potentially being more prominent
was slightly but not significantly longer than those with (e.g. ‘concern for others’ – Ali et al., 2020; ‘fear of losing
AN. control/ fear of change’ – Griffiths et al., 2018; ‘lack of
When perceived barriers to treatment-seeking were time/lack of perceived need’ – Lipson et al., 2017). This is
examined (e.g. cost of treatment, stigma and shame, acces- likely due to variations in the measurement of stigma and
sibility of treatment, social/work issues, GP’s lack of ED shame (i.e. different phrasing and inclusion of different

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Hamilton et al. 255

types of barriers in each study) as well as stigma and shame individuals with any ED diagnosis experience significant
manifesting in different ways for individuals with different perceived stigma, and this may impact their ability to seek
EDs. Stigma towards EDs has been associated with attri- help; disclose their symptoms to family, friends and/or
butions of blame and personal responsibility (Puhl and health professionals; and access the treatment that they
Suh, 2015). The same studies found that when attitudes need.
towards EDs were compared to other psychological ill-
nesses, individuals with an ED (specifically AN and BN)
Clinical and theoretical implications
were considered to be more responsible for their illness.
Furthermore, individuals with BED were more likely to be Taken together, there are significant clinical and theoretical
blamed for their disorder (when compared to AN and BN) implications of these findings. Moderately effective treat-
and were perceived to be lacking in self-discipline (Ebneter ments for various EDs are available (Hay et al., 2003, 2014;
and Latner, 2013). As obesity commonly occurs among Murray et al., 2019), yet there is a significant delay in
individuals with BED, they often experience weight stigma accessing these treatments. Hence, determining the factors
alongside ED-specific stigma. Attributions of personal that impede treatment-seeking for EDs is imperative in suc-
responsibility and negative stereotypes (e.g. lacking self- cessfully treating these serious and debilitating disorders.
discipline) have also been associated with BN (Ebneter et This study has highlighted the substantial length of time
al., 2011). Individuals with atypical AN experience more that symptoms persist prior to accessing treatment.
severe distress related to eating and body image compared Recovery from EDs, especially from AN, becomes much
to patients with AN (Sawyer et al., 2016), and it is possible less likely the longer the duration of the illness (Von Holle
that their level of distress could be exacerbated by their et al., 2008); therefore, individuals need to access appropri-
experience of weight stigma. ate ED-specific treatment as soon as possible to increase
Ali et al. (2020) found that individuals with AN and BN treatment effectiveness.
were more likely to endorse feelings of embarrassment The current findings suggest that stigma plays a pivotal
about their symptoms, whereas they infrequently endorsed role in preventing earlier treatment-seeking. As such,
items of perceived stigma from others. It is important to healthcare professionals need to be cognisant of the per-
note that in this study the AN and BN groups were signifi- ceived stigmatisation individuals with EDs may have expe-
cantly smaller than the BED or Other-ED groups and were rienced and ensure sensitivity when assessing and treating
likely to have higher symptom severity, so this could these individuals. Increased psychoeducation regarding
account for higher scores on items related to stigma and EDs needs to be provided to both treating clinicians and the
shame. Furthermore, there is significant conceptual overlap community to aid earlier detection of symptoms and reduce
between embarrassment and internalised stigma. Stigma is stigma.
a complex construct that is likely to be experienced, inter- From a theoretical perspective, it is noteworthy that the
preted and expressed differently depending on the type and OSFED group, primarily comprised of individuals with
severity of ED symptomatology. Stigma is often measured atypical AN, was the largest group in this study. Despite not
by a single item (as in this study), and therefore this form of being underweight, research has shown that individuals
measurement may not be sensitive enough to detect suffi- with atypical AN experience significant physical and psy-
cient variability within this construct. chological complications (Sawyer et al., 2016). The preva-
It is clear from the research that community beliefs about lence of atypical AN in our sample may be reflective of a
EDs often perpetuate the interpretation that EDs are a life- changing ED landscape. Growing diet culture, particularly
style choice rather than an illness. Individuals with EDs in Western society, is likely to have exacerbated the distress
have reported often experiencing stigmatising attitudes of associated with wanting to be thinner and led to intense
families and friends in regard to their symptoms (e.g. Akey fears of fatness experienced by individuals with atypical
et al., 2013; Becker et al., 2010; Reyes-Rodríguez et al., AN. A rapid growth in the number of adolescent atypical
2013). Stigmatisation often results in feelings of intense AN patients in inpatient care settings has been reported
shame or embarrassment as shown in the study by Cachelin (Whitelaw et al., 2014), with one-third of inpatients having
et al. (2001), revealing that women receiving ED treatment this diagnosis (Peebles et al., 2017). The DSM-5 attempted
experienced higher levels of shame than comparable con- to better define EDs by making significant changes to the
trols. Furthermore, there is a strong relationship between eating disorders not otherwise specified (EDNOS) category
shame and lack of disclosure in therapy (Swan and Andrews, (now OSFED), by adding BED as a standalone ED and by
2003). Evidence clearly shows that weight bias is still relaxing the classification criteria of AN (APA, 2013).
widely prevalent among professionals who treat EDs (Puhl However, given the increasing prevalence of atypical AN
et al., 2014), and this is likely to play a considerable role in and the fact that it is only captured within the OSFED group,
reduced treatment-seeking for individuals with BMIs in the it may be time to consider the utility of this diagnosis and
healthy or higher ranges. Therefore, our findings corrobo- contemplate better defining this growing category to ensure
rate previous research and add to it by suggesting that individuals receive the most appropriate treatment.

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256 ANZJP Articles

Limitations Recommendations for future research

Several limitations of this study should be considered This was an important study in an under-researched area,
when interpreting the findings. First, the small and une- and it is imperative to reproduce and further these findings
qual sample sizes of the diagnostic groups limited the in forthcoming research. It would be essential to replicate
scope of statistical analysis and interpretation, and it is this study in a larger and more representative sample to
therefore necessary to replicate the findings in a larger establish the generalisability of the results. Future studies
sample to ensure validity. Overall, the descriptive varia- should consider conducting this research in a country with
bles (e.g. age and BMI) in our sample were consistent no publicly funded national healthcare system, in both urban
with the lifetime prevalence estimates found in previous and regional areas, and with individuals from diverse eth-
studies (e.g. Hudson et al., 2007). Previous epidemiologi- nicities and social-economic backgrounds to capture the full
cal studies indicated that AN and BN are more common in spectrum of barriers that individuals with EDs may face.
females than males, but BED symptoms are more com- Future research should also consider including addi-
mon in males (Striegel et al., 2009). Our study revealed a tional perceived barriers that were not included in this study
significantly smaller ratio of males to female than has pre- (e.g. personal characteristics) and attempt to tease out the
viously been suggested, with males accounting for only impact of the involvement of others in treatment-seeking
3–8% of each diagnostic group. Forrest et al. (2017) found (e.g. involvement of parents/carers/family members in rec-
that less than 10% of males with an ED sought treatment; ognising symptoms and initiating treatment). Moreover,
therefore, it is understandable that the number of males future studies should attempt to better understand the role
included in the study is small given it is a treatment-seek- of stigma for each disorder, especially how the latency to
ing sample. It would be important to replicate these find- treatment-seeking for BED, BN and atypical AN could be
ings in a larger sample to explore whether the proportion explained by secrecy around illness and symptoms, as well
of treatment-seeking males is potentially less than has as shame and fear of stigmatisation from the community
previously been proposed. and health professionals.
Second, all participants in this study were accessing Previous research conducted in this area has varied
treatment at private ED facilities in metropolitan areas. greatly in terms of quality and methodology (e.g. behav-
Therefore, while this study captured barriers that were ulti- ioural coding, self-report questionnaires and clinical inter-
mately overcome, we did not assess potentially insurmount- views; Regan et al., 2017), so it would be useful to develop
able barriers among people living with EDs in the a standardised measure to assess ED-specific treatment-
community who have never accessed treatment. Similarly, seeking that can be employed across various populations to
it is unlikely that cost-related or geography-related barriers ensure consistency of findings. This study modified the
limiting the accessibility of treatment would have been questionnaire developed by Thompson and Park (2016) to
endorsed in this sample given participants were accessing be appropriate for the Australian context; however, more
private healthcare. research is needed to determine the validity and reliability
Finally, as previously discussed, this study only of this measure.
included six types of perceived barriers to treatment-seek-
ing; however, it is conceivable that other barriers not
included in this study could have potentially differentiated Conclusion
the diagnostic groups (e.g. individual characteristics such This study highlights the substantial and damaging delay in
as motivation and perceived control). While this study was seeking and receiving appropriate ED-specific treatment.
being undertaken, Ali et al. (2020) created and used a more Our findings suggest that while individuals with AN expe-
comprehensive measure that incorporated several ques- rience a delay of over 2 years on average, individuals with
tions for each barrier in order to capture the complex nature BN and BED face significantly longer delays to treatment-
of each construct. Different measures in each study may seeking. Stigma appears to be a significant barrier prevent-
account for some of the variation in results. This highlights ing individuals with all ED diagnoses from seeking
the importance of consistency in measurement to allow for treatment; however, further research is needed to investi-
more reliable and generalisable findings. The measure in gate other factors contributing to this delay.
this study has not been validated in this population in its
altered form. The Cronbach’s alpha was quite low when Declaration of Conflicting Interests
using this scale; however, as each barrier was interpreted The author(s) declared the following potential conflicts of inter-
separately, this did not significantly impact the results. As est with respect to the research, authorship and/or publication of
with all self-report measures, recall difficulties can be a this article: S.T. is the Co-Chair of the Takeda Virtual Clinical
confounding factor, but this is standard practice in research Advisory Board for BED and has also received honoraria for
assessing treatment-seeking. commissioned reports, public speaking engagements, webinars

Australian & New Zealand Journal of Psychiatry, 56(3)

Hamilton et al. 257

and consultancy. He also receives honoraria from Hogrefe and and screening program. International Journal of Eating Disorders 37:
Huber, McGraw Hill and Taylor and Frances for published work. 38–43.
He is a member of the Commonwealth Technical Advisory Bohrer BK, Carroll IA, Forbush KT, et al. (2017) Treatment seeking
Committee on Eating Disorders and a mental health consultant to for eating disorders: Results from a nationally representative study.
International Journal of Eating Disorders 50: 1341–1349.
the Commonwealth Department of Veterans Affairs. He is a
Cachelin FM, Rebeck R, Veisel C, et al. (2001) Barriers to treatment
member of the steering committee of the National Eating disor- for eating disorders among ethnically diverse women. International
ders Collaboration. S.T. is the cofounding editor-in-chief of the Journal of Eating Disorders 30: 269–278.
Journal of Eating Disorders. P.H. receives/has received sessional Cachelin FM, Striegel-Moore RH and Regan PC (2006) Factors asso-
fees and lecture fees from the Australian Medical Council, ciated with treatment seeking in a community sample of European
Therapeutic Guidelines publication and New South Wales American and Mexican American women with eating disorders.
Institute of Psychiatry, and royalties/honoraria from Hogrefe and European Eating Disorders Review: The Professional Journal of the
Huber, McGraw Hill Education, and Blackwell Scientific Eating Disorders Association 14: 422–429.
Publications, Biomed Central and PlosMedicine, and she has Cohen J (1992) A power primer. Psychological Bulletin 112: 1155–1159.
received research grants from the NHMRC and ARC. She is Ebneter DS and Latner JD (2013) Stigmatizing attitudes differ across
mental health disorders: A comparison of stigma across eating disor-
Chair of the National Eating Disorders Collaboration Steering
ders, obesity, and major depressive disorder. The Journal of Nervous
Committee in Australia (2019–) and was Member of the ICD-11 and Mental Disease 201: 281–285.
Working Group for Eating Disorders (2012–2019) and was Chair Ebneter DS, Latner JD and O’Brien KS (2011) Just world beliefs, causal
Clinical Practice Guidelines Project Working Group (Eating beliefs, and acquaintance: Associations with stigma toward eating
Disorders) of RANZCP (2012–2015). She has prepared a report disorders and obesity. Personality and Individual Differences 51:
under contract and consulted to Takeda Pharmaceuticals. A.H., 618–622.
D.M., C.B., S.B., M.G., G.H. and C.T. have no conflict of interest Fairburn CG and Beglin SJ (1994) Assessment of eating disorders:
to declare. Interview or self-report questionnaire? International Journal of
Eating Disorders 16: 363–370.
Fatt SJ, Mond J, Bussey K, et al. (2020) Help-seeking for body image
Funding problems among adolescents with eating disorders: Findings from
The author(s) received no financial support for the research, the EveryBODY study. Eating and Weight Disorders: Studies on
authorship and/or publication of this article. Anorexia, Bulimia and Obesity 25: 1267–1275.
Forney KJ, Buchman-Schmitt JM, Keel PK, et al. (2016) The medical
complications associated with purging. International Journal of
ORCID iDs Eating Disorders 49: 249–259.
Amber Hamilton https://orcid.org/0000-0001-9001-4585 Forrest LN, Smith AR and Swanson SA (2017) Characteristics of seeking
Phillipa Hay https://orcid.org/0000-0003-0296-6856 treatment among US adolescents with eating disorders. International
Journal of Eating Disorders 50: 826–833.
Griffiths S, Rossell SL, Mitchison D, et al. (2018) Pathways into treatment
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Puhl RM, Latner JD, King KM, et al. (2014) Weight bias among profession- Appendix 1
als treating eating disorders: Attitudes about treatment and perceived
patient outcomes. International Journal of Eating Disorders 47: 65–75. Latency to treatment-seeking questions:
Regan P, Cachelin FM and Minnick AM (2017) Initial treatment seeking
from professional health care providers for eating disorders: A review 1. From the time of onset of your eating disorder symp-
and synthesis of potential barriers to and facilitators of ‘first contact’. toms, approximately how long did you wait to seek
International Journal of Eating Disorders 50: 190–209. treatment?
Reyes-Rodríguez ML, Ramírez J, Davis K, et al. (2013) Exploring barri-
2. From the time you began to seek treatment, how
ers and facilitators in eating disorders treatment among Latinas in the
United States. Journal of Latina/o Psychology 1: 112. long did you have to wait to access it?
Sawyer SM, Whitelaw M, Le Grange D, et al. (2016) Physical and psy-
chological morbidity in adolescents with atypical anorexia nervosa.
Pediatrics 137: e20154080. Perceived barriers to seeking and
Steinhausen H-C (2002) The outcome of anorexia nervosa in the 20th cen- accessing treatment questionnaire:
tury. American Journal of Psychiatry 159: 1284–1293.
Striegel-Moore RH, Rosselli F, Perrin N, et al. (2009) Gender difference Please rate how each of the following barriers affected your
in the prevalence of eating disorder symptoms. International Journal access or use of outpatient or inpatient eating disorder treat-
of Eating Disorders 42: 471–474. ment (adapted from Thompson and Park, 2016):

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Hamilton et al. 259

No impact at all Moderately impactful Extremely impactful

1. Cost (e.g. cost of service, travel expenses, 1 2 3 4 5

time off work)

2. Stigma associated with eating 1 2 3 4 5

disorder (e.g. did not feel comfortable
disclosing my condition to my GP, guilt or
shame associated with my symptoms, fear
of judgement from family/social group)

3. Inaccessible treatment (e.g. distance to 1 2 3 4 5

treatment facility, long waitlist to get into
treatment facility)

4. Social/work barriers (e.g. family 1 2 3 4 5

obligations, work commitments)

5. GP/health eating disorder knowledge 1 2 3 4 5

(e.g. GP/physician did not recognise the
eating disorder)

6. Personal eating disorder knowledge 1 2 3 4 5

(e.g. not knowing about treatments for
eating disorders or where to find them)

7. Other, please specify: _______________ 1 2 3 4 5

GP: general practitioner.

Australian & New Zealand Journal of Psychiatry, 56(3)