critical essay on eating disorder

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• > The Explanation of Eating Disorders: A Critical Analysis

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The explanation of eating disorders: a critical analysis.

Published online by Cambridge University Press:  29 April 2020

Eating disorders (EDs) are one of the most severe and complex mental health problems facing researchers and clinicians today. The effective prevention and treatment of these conditions is therefore of paramount importance. However, at present our treatments fall short: generally demonstrating only poor to moderate efficacy, and often completely ineffective for severe or chronic cases. A possible reason for this is that the current theories underlying these treatments are flawed. In this paper, we review and evaluate several prominent theoretical explanations associated with current frontline and promising treatments for ED. In doing so, we identify fundamental problems within the construction of current ED explanations and their implications for treatment. In response to these findings, we propose several strategies for the construction of future ED explanations which we believe have the power to ameliorate these problems and potentially help to develop more efficacious treatment downstream.

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• Volume 37, Issue 2
• Hannah Hawkins-Elder (a1) and Tony Ward (a1)
• DOI: https://doi.org/10.1017/bec.2020.6

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• Open access
• Published: 30 May 2023

Eating disorder outcomes: findings from a rapid review of over a decade of research

• Jane Miskovic-Wheatley 1 , 2 ,
• Emma Bryant 1 , 2 ,
• Shu Hwa Ong 1 , 2 ,
• Sabina Vatter 1 , 2 ,
• Anvi Le 3 ,
• National Eating Disorder Research Consortium ,
• Stephen Touyz 1 , 2 &
• Sarah Maguire 1 , 2  

Journal of Eating Disorders volume  11 , Article number:  85 ( 2023 ) Cite this article

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Eating disorders (ED), especially Anorexia Nervosa (AN), are internationally reported to have amongst the highest mortality and suicide rates in mental health. With limited evidence for current pharmacological and/or psychological treatments, there is a grave responsibility within health research to better understand outcomes for people with a lived experience of ED, factors and interventions that may reduce the detrimental impact of illness and to optimise recovery. This paper aims to synthesise the literature on outcomes for people with ED, including rates of remission, recovery and relapse, diagnostic crossover, and mortality.

This paper forms part of a Rapid Review series scoping the evidence for the field of ED, conducted to inform the Australian National Eating Disorders Research and Translation Strategy 2021–2031, funded and released by the Australian Government. ScienceDirect, PubMed and Ovid/MEDLINE were searched for studies published between 2009 and 2022 in English. High-level evidence such as meta-analyses, large population studies and Randomised Controlled Trials were prioritised through purposive sampling. Data from selected studies relating to outcomes for people with ED were synthesised and are disseminated in the current review.

Of the over 1320 studies included in the Rapid Review, the proportion of articles focused on outcomes in ED was relatively small, under 9%. Most evidence was focused on the diagnostic categories of AN, Bulimia Nervosa and Binge Eating Disorder, with limited outcome studies in other ED diagnostic groups. Factors such as age at presentation, gender, quality of life, the presence of co-occurring psychiatric and/or medical conditions, engagement in treatment and access to relapse prevention programs were associated with outcomes across diagnoses, including mortality rates.

Results are difficult to interpret due to inconsistent study definitions of remission, recovery and relapse, lack of longer-term follow-up and the potential for diagnostic crossover. Overall, there is evidence of low rates of remission and high risk of mortality, despite evidence-based treatments, especially for AN. It is strongly recommended that research in long-term outcomes, and the factors that influence better outcomes, using more consistent variables and methodologies, is prioritised for people with ED.

Plain English summary

Eating disorders are complex psychiatric conditions that can seriously impact a person’s physical health. Whilst they are consistently associated with high mortality rates and significant psychosocial difficulties, lack of agreement on definitions of recovery, remission and relapse, as well as variations in methodology used to assess for standardised mortality and disability burden, means clear outcomes can be difficult to report. The current review is part of a larger Rapid Review series conducted to inform the development of Australia’s National Eating Disorders Research and Translation Strategy 2021–2031. A Rapid Review is designed to comprehensively summarise a body of literature in a short timeframe to guide policymaking and address urgent health concerns. This Rapid Review synthesises the current evidence-base for outcomes for people with eating disorders and identifies gaps in research and treatment to guide decision making and future clinical research. A critical overview of the scientific literature relating to outcomes in Western healthcare systems that may inform health policy and research in an Australian context is provided in this paper. This includes remission, recovery and relapse rates, diagnostic cross-over, the impact of relapse prevention programs, factors associated with outcomes, and findings related to mortality.

Introduction

Eating disorders (ED), especially Anorexia Nervosa (AN), have amongst the highest mortality and suicide rates in mental health. While there has been significant research into causal and maintaining factors, early identification efforts and evidence-based treatment approaches, global incidence rates have increased from 3.4% calculated between 2000 and 2006 to 7.8% between 2013 and 2018 [ 1 ]. While historically seen as a female illness, poorer outcomes are increasingly seen in other genders, including males [ 2 ].

Over 3.3 million healthy life years are lost worldwide due to ED each year, and many more lost to disability due to medical and psychiatric complications [ 3 ]. Suicide accounts for approximately 20% of non-natural deaths among people with ED [ 4 ]. As this loss of healthy life is preventable, there is a grave responsibility to better understand outcomes for people with ED, including factors which may minimise the detrimental impact they have on individuals, carers, and communities, as well as to optimise recovery.

There has been considerable debate within the clinical, scientific and lived experience (i.e., patient, consumer, carer) communities about the definition and measurement of key outcomes in ED, including ‘remission’ from illness (a period of relief from symptoms), ‘relapse’ (a resumption of symptoms) and ‘recovery’ (cessation of illness) [ 5 , 6 ], which can compromise outcome comparisons. Disparities include outcome variables relating to eating behaviours as well as medical, psychological, social and quality of life factors. There is increasing awareness in the literature of the elevated likelihood of diagnostic crossover [ 7 ]; research examining specific diagnostic profiles potentially misses outcomes where symptom experience transforms rather than alleviates. Methodological approaches in outcomes research are varied, the most significant being length of time to follow up, compromising direct study comparisons.

The aim of this Rapid Review (RR) is to synthesise the literature on outcomes for people with ED, including rates of remission, recovery and relapse, diagnostic crossover, and mortality. Factors influencing outcomes were summarised including demographic, illness, treatment, co-morbidities, co-occurring health conditions, societal factors, and impact of relapse prevention programs. This RR forms one of a series of reviews scoping the field of ED commissioned to inform the Australian National Eating Disorders Research and Translation Strategy 2021–2031 [ 8 ]. The objective is to evaluate the current literature in ED outcomes to identify areas of consensus, knowledge gaps and suggestions for future research.

The Australian Government Commonwealth Department of Health funded the InsideOut Institute for Eating Disorders (IOI) to develop the Australian Eating Disorders Research and Translation Strategy 2021–2031 [ 8 ] under the Psych Services for Hard to Reach Groups initiative (ID 4-8MSSLE). The strategy was developed in partnership with state and national stakeholders including clinicians, service providers, researchers, and experts by lived experience (including consumers and families/carers). Developed through a 2 year national consultation and collaboration process, the strategy provides the roadmap to establishing ED as a national research priority and is the first disorder-specific strategy to be developed in consultation with the National Mental Health Commission. To inform the strategy, IOI commissioned Healthcare Management Advisors (HMA) to conduct a series of RRs to broadly assess all available peer-reviewed literature on the six DSM-V [ 9 ] listed ED. RR’s were conducted in the following domains: (1) population, prevalence, disease burden, Quality of Life in Western developed countries; (2) risk factors; (3) co-occurring conditions and medical complications; (4) screening and diagnosis; (5) prevention and early intervention; (6) psychotherapies and relapse prevention; (7) models of care; (8) pharmacotherapies, alternative and adjunctive therapies; and (9) outcomes (including mortality) (current RR), with every identified paper allocated to only one of the above domains from abstract analysis by two investigators. Each RR was submitted for independent peer review to the Journal of Eating Disorders special edition, “Improving the future by understanding the present: evidence reviews for the field of eating disorders”.

A RR Protocol [ 10 ] was utilised to swiftly synthesise evidence to guide public policy and decision-making [ 11 ]. This approach has been adopted by several leading health organisations, including the World Health Organization [ 12 ] and the Canadian Agency for Drugs and Technologies in Health Rapid Response Service [ 13 ], to build a strong evidence base in a timely and accelerated manner, without compromising quality. RR was chosen as the most suitable design as it is conducted with broader search terms and inclusion criteria allowing to gain a better understanding of a specific field, returning a larger number of search results and providing a snapshot of key findings detailing the current state of a field at study [ 10 ]. A RR is not designed to be as comprehensive as a systematic review—it is purposive rather than exhaustive and provides actionable evidence to guide health policy [ 14 ].

The RR is a narrative synthesis adhering to the PRISMA guidelines [ 15 ]. It is divided by topic area and presented as a series of papers. Three research databases were searched: ScienceDirect, PubMed and Ovid/MEDLINE. To establish a broad understanding of the progress made in the field of eating disorders, and to capture the largest evidence base on the past 13 years (originally 2009–2019, but expanded to include the preceding two years), the eligibility criteria for included studies into the RR were kept broad. Therefore, included studies were published between 2009 and 2022, in English, and conducted within Western healthcare systems or health systems comparable to Australia in terms of structure and resourcing. The initial search and review process was conducted by three reviewers between 5 December 2019 and 16 January 2020. The re-run for the years 2020–2021 was conducted by two reviewers at the end of May 2021 and a final run for 2022 conducted in January 2023 to ensure the most up to date publications were included prior to publication.

The RR had a translational research focus with the objective of identifying evidence relevant to developing optimal care pathways. Searches, therefore, used a Population, Intervention, Comparison, Outcome (PICO) approach to identify literature relating to population impact, prevention and early intervention, treatment, and long-term outcomes. Purposive sampling focused on high-level evidence studies such as: meta-analyses; systematic reviews; moderately sized randomised controlled trials (RCTs) ( n  > 50); moderately sized controlled-cohort studies ( n  > 50), or population studies ( n  > 500). However, the diagnoses Avoidant Restrictive Food Intake Disorder (ARFID), Eating Disorder Not Otherwise Specified (EDNOS), Other Specified Feeding or Eating Disorder (OSFED) and Unspecified Feeding or Eating Disorder (UFED) necessitated a less stringent eligibility criterion due to a paucity of published articles. As these diagnoses are newly captured in the DSM-V [ 9 ] (released in 2013, within the allocated search timeframe), the evidence base is emerging, and fewer studies have been conducted. Thus, smaller studies ( n  ≤ 20) and narrative reviews were also considered and included. Grey literature, such as clinical or practice guidelines, protocol papers (without results) and Masters’ theses or dissertations, was excluded.

Full methodological details including eligibility criteria, search strategy and terms and data analysis are published in a separate protocol paper [ 10 ]. The full RR included a total of over 1320 studies (see Additional file 1 : Fig. S1). Data from included studies relating to outcomes for eating disorders were synthesised and are presented in the current review.

Of the 1320 articles included in the RR, the proportion of articles focused on outcomes in ED was relatively small, just less than 9% ( n  = 116) (see Additional file 2 : Table S1). Studies typically examined outcomes in AN, Bulimia Nervosa (BN) and Binge Eating Disorder (BED), with limited research in other diagnostic groups. Whereas most outcome studies reported recovery, remission and relapse rates, others explored factors impacting outcomes, such as quality of life, co-occurring conditions, and outcomes from relapse prevention programs.

ED, particularly AN, have long been associated with an increased risk of mortality. The current review summarises best available evidence exploring this association. Several factors complicate these findings including a lack of consensus on definitions of remission, recovery and relapse, widely varying treatment protocols and research methodologies, and limited transdiagnostic outcome studies or syntheses such as meta-analyses. Table 1 provides a summary of outcomes reported by studies identified in this review. There is considerable heterogeneity in the reported measures.

Overall outcomes

A good outcome for a person experiencing ED symptomatology is commonly defined as either remission or no longer meeting diagnostic criteria, as well as improved levels of psychosocial functioning and quality of life [ 28 , 29 ]. However, such a comprehensive approach is rarely considered, and there is no consensus on a definition for recovery, remission, or relapse for any of the ED diagnoses [ 30 , 31 ]. To contextualise this variation, definitions and determinants for these terms are presented in Table 2 .

The terms ‘remission’ and ‘recovery’ appear to be used interchangeably in the literature. Whilst ‘remission’ is usually defined by an absence of diagnostic symptomatology, and ‘recovery’ an improvement in overall functioning, the period in which an individual must be symptom-free to be considered ‘remitted’ or ‘recovered’ varies greatly between studies, follow-up (FU) time periods are inconsistent, and very few studies examine return to psychosocial function and quality of life (QoL) after alleviation of symptoms. The current review uses the terms adopted by the original studies. ‘Relapse’ is typically defined by a return of symptoms after a period of symptom relief. The reviewed studies report a variety of symptom determinants including scores on standardised psychological and behavioural interviews or questionnaires, weight criteria [including Body Mass Index (BMI) or %Expected Body Weight (%EBW)], clinical assessment by a multidisciplinary team, self-reported ED behaviours, meeting diagnostic criteria, or a combination of the above.

Remission, recovery, and relapse

In a global overview of all studies reviewed, remission or recovery rates were reported for around half of the cohort, regardless of diagnostic group. For example, a 30 month FU study of a transdiagnostic cohort of patients found 42% obtained full and 72% partial remission, with no difference between diagnostic groups for younger people; however, bulimic symptoms emerged frequently during FU, regardless of initial diagnosis [ 44 ]. A 6 year study following the course of a large clinical sample ( n  = 793) reported overall recovery rates of 52% for AN, 50–52% for BN, 57% for EDNOS-Anorectic type (EDNOS-A), 60–64% for BED and 64–80% for EDNOS-Bulimic type (EDNOS-B) [ 7 ]. Of those who recorded full remission at end of treatment (EOT), relapse was highest for AN (26%), followed by BN (18%), and EDNOS-B (16%). Relapse was less common for individuals with BED (11–12%), and EDNOS-A (4%). Change in diagnosis (e.g., from AN to BN) was also seen within the relapse group [ 7 ].

Longer-term FU studies may more accurately reflect the high rates of relapse and diagnostic crossover associated with ED. A 17 year outcome study of ED in adult patients found only 29% remained fully recovered, with 21% partially recovered and half (50%) remaining ill [ 52 ], noting the protracted nature of illness for adults with longstanding ED. Relapse is observed at high rates (over 30%) among people with AN and BN at 22 year FU [ 61 ]. In a large clinical study using predictive statistical modelling, full remission was more likely for people with BED (47.4%) and AN (43.9%) compared to BN (25.2%) and OSFED (23.2%) [ 41 ]. This result is distinct from other studies citing AN to have the worst clinical outcomes within the diagnostic profiles [ 52 ]. The cut‐off points for the duration of illness associated with decreased likelihood of remission were 6–8 years for OSFED, 12–14 years for AN/BN and 20–21 years for BED [ 41 ]. As with recovery rates, reported rates of relapse are highly variable due to differing definitions and study methodologies used by researchers in FU studies [ 35 , 61 ].

Evidence from a meta-analysis of 16 studies found four factor clusters that significantly contributed to relapse; however, also noted a substantial variability in procedures and measures compromising study comparison [ 62 ]. Factors contributing to heightened risk of relapse included severity of ED symptoms at pre- and post-treatment, presence and persistence of co-occurring conditions, higher age at onset and presentation to assessment, and longer duration of illness. Process treatment variables contributing to higher risk included longer duration of treatment, previous engagement in psychiatric and medical treatment (including specialist ED treatment) and having received inpatient treatment. These variables may indicate more significant illness factors necessitating a higher intensity of treatment.

Importantly, full recovery is possible, with research showing fully recovered people may be indistinguishable from healthy controls (HCs) on all physical, behavioural, and psychological domains (as evaluated by a battery of standardised assessment measures), except for anxiety (those who have fully recovered may have higher general anxiety levels than HCs) [ 29 ].

Diagnostic crossover

Most studies reported outcomes associated with specific ED diagnoses; however, given a significant proportion of individuals will move between ED diagnoses over time, it can be challenging to determine diagnosis-specific outcomes. Results from a 6 year FU study indicated that overall individuals with ED crossed over to other ED diagnoses during the FU observational period, most commonly AN to BN (23–27%), then BN to BED (8–11%), BN to AN (8–9%) and BED to BN (7–8%) [ 7 ]. Even higher crossover trends were observed in the subgroup reporting relapse during the FU period, with 61.5% of individuals originally diagnosed with AN developing BN, 27.2% and 18.1% of individuals originally diagnosed with BN developing AN and BED respectively, and 18.7% of people with a previous diagnosis of BED developing BN [ 7 ].

A review of 79 studies also showed a significant number of individuals with BN (22.5%) crossed over to other diagnostic groups (mostly OSFED) at FU [ 63 ]. A large prospective study of female adolescents and young adults in the United States ( n  = 9031) indicated that 12.9% of patients with BN later developed purging disorder and between 20 and 40% of individuals with subthreshold disorders progressed to full threshold disorders [ 64 ]. Progression from subthreshold to threshold eating disorders was higher for BN and BED (32% and 28%) than for AN (0%), with researchers suggesting higher risk for binge eating [ 66 ]. Progression from subthreshold to full threshold BN and BED was also common in adolescent females over the course of an 8 year observational study [ 33 ]. Some researchers contend that such diagnostic ‘instability’ demonstrates a need for ‘dimensional’ approaches to research and treatment which have greater focus on the severity rather than type of symptoms [ 7 ]. Diagnostic crossover is common and should be considered in the long-term management and monitoring of people with an ED.

Anorexia nervosa (AN)

People with restrictive-type ED have the poorest prognosis compared to the other diagnostic groups, particularly individuals displaying severe AN symptomatology (including lower weights and higher body image concerns) [ 44 ]. There is a paucity of effective pharmacological and/or psychological treatments for AN [ 65 ]. Reported rates of recovery vary and include 18% [ 56 ] to 52% at 6 year FU [ 7 ] to 60.3% at 13 year FU [ 20 ] and 62.8% at 22 year-FU [ 61 ]. Reported relapse rates in AN also vary, for example, 41.0% at 1 year post inpatient/day program treatment [ 35 ] to 30% at 22 year FU [ 61 ]. Average length of illness across the reviewed studies also varies from 6.5 years [ 56 ] to 14 years [ 41 ].

A variety of reported outcomes from treatment studies is likely due to the breadth of treatments under investigation, diverse study protocols and cohorts. For example, in a mixed cohort of female adult patients with AN and Atypical AN (A-AN), 33% were found to have made a full recovery at 3 year FU after treatment with cognitive behavioural therapy (CBT) [ 57 ], while 6.4% had a bad outcome and 6.4% a severe outcome. However, in a 5–10 year FU study of paediatric inpatients (mean age 12.5 years) approximately 41% had a good outcome, while 35% had intermediate and 24% poor outcome [ 66 ]. Multimodal treatment approaches including psychiatric, nutritional, and psychological rehabilitation have been found to be most efficacious for moderate to severe and enduring AN but noting a discrete rate of improvement [ 67 ].

Very few factors were able to predict outcomes in AN. Higher baseline BMI was consistently found to be the strongest predictor of recovery, and better outcomes were associated with shorter duration of illness [ 7 , 55 , 61 , 66 ]. Earlier age of illness onset [ 59 , 68 , 69 ] and older age at presentation to treatment [ 30 ] were related to chronicity of illness and associated with poorer outcome.

There was a consensus across a variety of studies that engagement in binge/purge behaviours (Anorexia Nervosa Binge/Purge subtype; AN-BP) was associated with a poorer prognosis [ 20 , 56 , 70 ]. Similarly, individuals with severe and enduring AN restrictive sub-type (AN-R) are likely to have a better outcome than individuals with AN-BP. AN-BP was associated with a two-fold greater risk of relapse compared to AN-R [ 30 , 35 ]. Some studies, however, were unable to find an association between AN subtype and outcome [ 55 ]. Other factors leading to poorer outcome and higher probability of relapse were combined ED presentations, such as combined AN/BN [ 35 ], higher shape concern [ 57 ], lower desired weight/BMI [ 44 ], more ED psychopathology at EOT, low or decreasing motivation to recover, and comorbid depression [ 35 , 61 ].

Preliminary genetic work has found associations between a single nucleotide polymorphism (SNP) in a ghrelin production gene (TT genotype at 3056 T-C) and recovery from AN-R [ 71 ], and the S-allele of the 5-HTTLPR genotype increasing the risk susceptibility for both depressive comorbidity and diagnostic crossover at FU of AN patients [ 72 ]. These studies, however, need to be interpreted with caution as they were conducted over a decade ago and have not since been replicated. Research in eating disorder genetics is a rapidly emerging area with potential clinical implications for assessment and treatment.

Bulimia nervosa (BN)

Overall, studies pertaining to a diagnostic profile of BN report remission recovery rates of around 40–60%, depending on criteria and FU period, as detailed below. Less than 40% of people achieved full symptom abstinence [ 73 ] and relapse occurred in around 30% of individuals [ 61 ]. A meta-analysis of 79 case series studies reported rates of recovery for BN at 45.0% for full recovery and 27.0% for partial remission, with 23.0% experiencing a chronic course and high rates of treatment dropout [ 63 ]. At 11 year FU, 38.0% reported remission in BN patients, increasing to 42.0% at 21 year [ 45 ]. At 22 year FU, 68.2% with BN were reported to have recovered [ 41 ]. Higher frequency of both objective binge episodes and self-induced vomiting factors influencing poorer outcomes [ 44 ].

Considering impact of treatment, analysis of engagement in self-induced vomiting as a predictor for outcome indicated there were no differences between groups in treatment dropout or response to CBT among a sample of 152 patients with various types of EDs (AN-BP, BN, EDNOS) at EOT [ 74 ]. Meta-analysis of results from 45 RCTs on psychotherapies for BN found 35.4% of treatment completers achieved symptom abstinence [ 73 ] with other studies indicating similar rates of recovery (around 52–59% depending on DSM criteria) [ 7 ].

Studies delivering CBT or other behavioural therapies reported the best outcomes for BN [ 73 ]. Specifically, early treatment progression, elimination of dietary restraint and normalisation of eating behaviour resulted in more positive outcomes [ 22 ]. These findings are supported by results from a study comparing outcomes of CBT and integrative cognitive-affective therapy (ICAT) [ 75 ]. Additional moderating effects were shown at FU (but not EOT), with greater improvements for those with less baseline depression, higher stimulus seeking (the need for excitement and stimulation) and affective lability (the experience of overly intense and unstable emotions) in the ICAT-BN group and lower stimulus seeking in the Enhanced Cognitive Behavioural Therapy (CBT-E) group. Lower affective lability showed improvements in both treatment groups [ 75 ]. Such findings indicate personality factors may deem one treatment approach more suitable to an individual than another.

A review of 4 RCTs of psychotherapy treatments for BN in adolescents (including FBT and CBT) reported overall psychological symptom improvement by EOT predicting better outcomes at 12 months, which underscored the need for not only behavioural but psychological improvement during 6 month treatment [ 31 ]. Other factors leading to poorer outcomes included less engagement in treatment, higher drive for thinness, less global functioning, and older age at presentation [ 45 ]. More research is needed into consistent predictors, mediators and moderators focused on treatment engagement and outcomes [ 22 ].

While many studies combine findings for BN and BED, one study specifically considered different emotions associated with binge eating within the two diagnostic profiles [ 60 ]. At baseline, binge eating was associated with anger/frustration for BN and depression for BED. At FU, objective binge eating (OBE) reduction in frequency (a measure of recovery) was associated with lower impulsivity and shape concern for BN but lower emotional eating and depressive symptoms for BED. These differences may provide approaches for effective intervention targets for differing presentations; however, how these may play out within a transdiagnostic approach requires further enquiry.

Binge eating disorder (BED)

BED is estimated to affect 1.5% of women and 0.3% of men worldwide, with higher prevalence (but more transient) in adolescents. Most adults report longstanding symptoms, 94% lifetime mental health conditions and 23% had attempted suicide, yet only half were in recognised healthcare or treatment [ 76 ].

Compared with AN and BN, long-term outcomes, and treatment success for individuals with BED were more favourable. Meta-analysis of BED abstinence rates suggests available psychotherapy and behavioural interventions are more effective for this population [ 77 ]. Additionally, stimulant medication (i.e., Vyvanse) has been found to be particularly effective to reduce binge eating [see [ 78 ] for full review]. Results from a study of people who received 12 months of CBT for BED indicated high rates of treatment response and favourable outcomes, maintained to 4 year FU. Significant improvements were observed with binge abstinence increasing from 30.0% at post-treatment to 67.0% at FU [ 79 ]. A meta-analysis reviewing psychological or behavioural treatments found Interpersonal Therapy (IPT) to be the treatment producing the greatest abstinence rates [ 73 ]. In a comparative study of IPT and CBT, people receiving CBT experienced increased ED symptoms between treatment and 4 year FU, while those who received IPT improved during the same period. Rates of remission at 4 year FU were also higher for IPT (76.7%) versus CBT (52.0%) [ 80 ].

One study specifically explored clinical differences between ED subtypes with and without lifetime obesity over 10 years. Prevalence of lifetime obesity in ED was 28.8% (ranging from 5% in AN to 87% in BED), with a threefold increase in lifetime obesity observed over the previous decade. Observed with temporal changes, people with ED and obesity had higher levels of childhood and family obesity, older-age onset, longer ED duration, higher levels of ED (particularly BED and BN) and poorer general psychopathology than those who were not in the obese weight range [ 81 ], suggesting greater clinical severity and poorer outcomes for people of higher weight.

Comparison of 6 year treatment outcomes between CBT and Behavioural Weight Loss Treatment (BWLT) found CBT more effective at post-treatment but fading effectiveness over time, with remission rates for both interventions lower than other reported studies (37%) [ 82 ]. A meta-analytic evaluation of 114 published and unpublished psychological and medical treatments found psychological treatments, structured self-help, and a combination of the two were all effective at EOT and 12 month FU but noted a wide variation in study design and quality, and the need for longer term FU. Efficacy and FU data for pharmacological and surgical weight loss treatments were lacking [ 77 ].

Whilst high weight and associated interventions (such as bariatric surgery) can be associated with any ED, they are frequently studied in relation to BED. A significant proportion of individuals seeking bariatric surgery (up to 42%) displayed binge eating symptomatology [ 83 ], yet little is known about the effect of these interventions on ED psychopathology and whether this differs by type of intervention. A systematic review of 23 studies of changes in ED behaviour following three different bariatric procedures found no specific procedure led to long term changes in ED profiles or behaviours [ 84 ]; however, another study investigating the placement of an intragastric balloon in obese patients found post-surgical reductions in grazing behaviours, emotional eating and EDNOS scores [ 85 ]. Bariatric surgery in general is associated with a reduction in ED, binge eating and depressive symptoms [ 86 ].

Outcomes among patients receiving bariatric surgery with and without BED were assessed where weight loss was comparable between the groups at 1 year FU. However, compared with participants receiving a BWLT-based lifestyle modification intervention instead of surgery, bariatric surgery patients lost significantly less weight at a 10.3% difference between groups. There was no significant difference between lifestyle modification and surgery groups in BED remission rates [ 87 ]. These results indicate that BLWT-type interventions are more effective than surgery at promoting weight loss in individuals with BED over a 1 year FU period, and people with BED and higher BMI were able to maintain weight loss in response to psychotherapy (CBT) at up to 5 year FU [ 88 ]. In analysis of health-related quality of life (HRQoL) in people with BED who received various levels of CBT (therapist-led, therapist-assisted and self-help), evaluation indicated that all modalities resulted in improvements to HRQoL. Poorer outcomes were associated with obesity and ED symptom severity at presentation, stressing the importance of early detection and intervention measures [ 89 ]. Research into the role of CBT in strengthening the effect of bariatric surgery for obesity is ongoing but promising [ 90 ].

EDNOS, OSFED and UFED

Similarly to BED, a diagnosis of DSM-IV EDNOS (now OSFED) was associated with a more favourable outcome than AN or BN, including shorter time to remission. One study reported remission rates for both EDNOS and BED at 4 year FU of approximately 80% [ 21 ]. The researchers suggested that an ‘otherwise specified’ diagnostic group might be comprised of individuals transitioning into or out of an ED rather than between diagnostic categories; however, more work is needed in this area to fully understand this diagnostic profile. The reported recovery rate from EDNOS-A has been found to be much lower at 57% than for EDNOS-B at 80% (DSM-V). One factor suggested leading to poorer outcomes for EDNOS-A was a higher association with a co-occurring condition of major depression and/or dysthymia not found in other EDNOS subtypes [ 7 ]. Another study found purging occurred in 6.7% from total (cross-diagnostic) ED referrals, but this subtype did not have different post-treatment remission rates or completion rates compared to non-purging profiles [ 91 ], so results are mixed.

Acknowledging the scarcity of research within these diagnostic groups, remission rates for adolescents including those with a diagnosis of Other Specified Feeding or Eating Disorder (OSFED) and Unspecified Feeding or Eating Disorder (UFED) was reported to be 23% at 12 month FU in the one study reviewed, but no detail was provided on recovery rates by diagnosis [ 26 ]. No available evidence was identified specifically for the DSM-V disorders OSFED or UFED for adults.

Avoidant/Restrictive Food Intake Disorder (ARFID)

Research into outcomes for people with ARFID is lacking, with only three studies meeting criteria for the review [ 23 , 24 , 25 ]. While, like AN, recovery for people with ARFID is usually measured by weight gain targets, one of the three studies [ 63 ] identified by this review instead reported on outcomes in terms of meeting a psychiatric diagnosis, making comparison between the studies difficult.

In a cross-diagnostic inpatient study, individuals presenting with ARFID were younger, had fewer reported ED behaviours and co-occurring conditions, less weight loss and were less likely to be bradycardic than individuals presenting with AN [ 25 ]. Although both groups received similar caloric intakes, ARFID patients relied on more enteral nutrition and required longer hospitalisations but had higher rates of remission and fewer readmissions than AN patients at 12 months. This study highlights the need for further investigation into inpatient treatment optimisation for different diagnostic profiles.

People with ARFID who had achieved remission post-treatment were able to maintain remission until 2.5 year FU, with most continuing to use outpatient treatment services [ 23 ]. In a 1 year FU study assessing ARFID, 62.0% of patients had achieved remission as defined by weight recovery and no longer meeting DSM-V criteria [ 25 ]. In a study following children treated for ARFID to a mean FU of 16 years post-treatment (age at FU 16.5–29.9 years), 26.3% continued to meet diagnostic criteria for ARFID with no diagnostic crossover, suggesting symptom stability [ 24 ]. Rates of recovery for ARFID patients in this study were not significantly different to the comparison group who had childhood onset AN, indicating similar prognoses for these disorders. No predictors of outcome for patients with ARFID were identified by the articles reviewed [ 63 ].

Community outcomes

While most outcome studies derive from health care settings, two studies were identified exploring outcomes of ED within the community. The first reported the 8 year prevalence, incidence, impairment, duration, and trajectory of ED via annual diagnostic interview of 496 adolescent females. Controlling for age, lifetime prevalence was 7.0% for BN/subthreshold BN, 6.6% for BED/subthreshold BED, 3.4% for purging disorder, 3.6% for AN/atypical AN, and 11.5% for feeding and eating disorders not otherwise classified. Peak onset age across the ED diagnostic profiles was 16–20 years with an average episode duration ranging from 3 months for BN to a year for AN; researchers noted that these episodes were shorter than the average duration estimates reported in similar research and may be representative of the transient nature of illness rather than longer term prognosis. ED were associated with greater functional impairment, distress, suicidality, and increased use of mental health treatment [ 27 ].

A second study followed 70 young people (mean age of 14 years at study commencement) meeting DSM-IV criteria for a binge eating or purging ED and found 44% no longer met criteria at ages 17 or 20, while 25% still met criteria at age 20 (the latter individuals were more likely to have externalising behaviour problems and purging behaviour at age 17). Those who experienced a persistent ED were less likely to complete secondary education and report higher depressive and anxiety symptoms at age 20, indicating the ongoing impacts of ED on education and quality of life [ 92 ]. These studies provide information about the course and outcome of early onset ED at the population level with indicators of predictive and maintaining factors.

Factors relating to outcomes

Several factors relating to outcomes have been studied across ED presentations and in specific diagnostic profiles. These include predictors of outcome, moderators or mediators of outcome, and illness reinforcers, considering age of presentation and duration of illness, ED symptomatology, presence of co-occurring medical and psychiatric conditions, and treatment characteristics.

Age of presentation

Age of presentation to treatment has been shown to have a significant impact on outcome in all diagnoses. One study considering ED in general (including AN, BN and EDNOS) showed presentation at mid-life drastically decreased chances of achieving a good outcome in response to treatment (“good” outcome defined as BMI ≥ 18.5, 3 month remission of symptoms and Eating Disorder Examination Questionnaire (EDE-Q) scores within or better than normal range). Six percent of mid-life (≥ 40 years) presentations achieved a good outcome post-treatment compared to 14% of young adults (18–39 years) and 28% of younger people (< 18 years) [ 28 ]. This finding has also been seen in research comparing 22 year outcomes of AN and BN [ 61 ].

People presenting in mid-life often have more complex medical and psychiatric profiles as well as life circumstances. They are also far more likely to have a sustained length of illness by the time of initial presentation: 27.8 years compared with 1.2 years for youths [ 28 ]. Longer duration of illness is associated with greater increase in self-reported clinical impairment [ 93 ]; however, illness duration does not necessarily influence treatment outcome, though wide variation in study protocol and quality limit the interpretability of these findings [ 37 , 94 ]. The disparity in rates of favourable outcome between age groups highlights the importance of prevention, screening, awareness of ED in primary care settings and early intervention programs, as well as targeted programs for those presenting with more complex psychosocial and life challenges.

Clinical features and co-occurring conditions

A systematic review assessed the average duration of untreated illness duration in help-seeking populations at first contact to treatment services at 29.9 months for AN, 53.0 months for BN and 67.4 months for BED [ 69 ]. ED clinical factors significantly influence outcomes, with poorer prognosis in those with time of untreated illness, primary diagnosis of AN [ 95 ], lower BMI at presentation [ 93 ], and presence of binge/purge symptomatology [ 20 , 56 ]. Certain ED behaviours and cognitions at intake predict better outcome such as lower rates of purging behaviour, higher rates of body image flexibility [ 96 ], and lower EDE-Q scores at baseline [ 97 ].

There is strong evidence for the presence of co-occurring medical and psychiatric conditions as a predictor of outcome in ED. At 22 year FU, the presence of co-occurring psychiatric conditions including Major Depressive Disorder (MDD) and Substance Use Disorder (SUD) were negatively correlated with recovery, with those who had recovered from an ED being 2.17 times less likely to have MDD and 5.33 times less likely to have SUD [ 98 ]. Co-occurring mood disorders consistently lead to poorer outcomes [ 47 , 51 , 55 , 99 ] and greater chance of moving between ED diagnoses [ 7 ]. In one study, presence of a mood disorder was the strongest predictor of classification of AN-R (but not AN-BP) [ 61 ]. Comorbid personality disorder was found in several studies to be the most common predictor of poorer outcome in ED [ 20 , 41 , 44 , 67 ].

In an adolescent sample, 39% of individuals with AN met criteria for at least one other psychiatric disorder and poorer prognosis was associated with co-occurring diagnoses of Obsessive Compulsive Disorder (OCD) and autistic traits [ 59 ]. In a large community childhood health longitudinal study, presence of any ED profile was predictive of later anxiety and mood disorders. AN was prospectively associated with long term low weight, while BN and BED with obesity, drug use and deliberate self-harm compared to age-matched children who did not have an ED profile [ 100 ].

Personality traits have also been found to be associated with poorer outcomes such as low persistence and harm avoidance in AN, lower self-directedness (BN) and reward dependence (BED) [ 41 ]. Higher perfectionism at intake predicted a lower likelihood of remission at 12 months in an adolescent sample [ 26 ], a finding consistent with previous research in adult cohorts [ 41 ].

Medical comorbidities such as malnutrition [ 72 ], concurrent type 1 diabetes [ 39 , 42 ], bodily pain [ 55 ] and viral infections [ 72 ] have been identified as risk factors for poorer outcomes and increased rates of relapse. Other co-occurring factors associated with poorer outcomes for people with ED include anxiety [ 47 , 56 , 93 ], dissociative experiences [ 101 ], impulsivity [ 56 ], adjustment disorder [ 95 ], use of psychotropic medications [ 30 ], and autistic traits have been associated with greater use of ED treatment [ 102 ].

Psychosocial, environmental and health factors

A large United States community study found positive correlation between higher rates of smoking behaviour and ED in women [ 99 ]. The same study also reported birth-related outcomes in women with ED including having a later first birth, pregnancy health concerns, experience of miscarriage or abortion [ 99 ], and women with ED may have increased experience of adverse pregnancy and neonatal outcomes, and lower numbers of children [ 3 ]. For women with a history of ED, ED symptoms tend to alleviate during pregnancy; however, they commonly resurface during the postnatal period, and up to a third of women with ED report postnatal depression [ 103 , 104 ].

Demographic factors leading to poorer prognosis include being male [ 72 ], of the LGBTQIA + community [ 105 ], being from a non-white ethnic background, low family education levels [ 99 ], lower socioeconomic status, living in a remote or rural area [ 72 ], poor employment and social adjustment [ 30 ], functional impairment [ 47 ], and having a family member with an ED [ 99 ]. Complicating prognosis are additional factors such as financial stress (individuals with ED face yearly health care costs 48% higher than the general population, while the presence of co-occurring psychiatric conditions is associated with 48% lower yearly earnings [ 3 ]. These financial challenges limit ability to access evidence-based treatments (especially in countries lacking in publicly funded health care) which may prolong illness.

There is strong evidence to suggest QoL is reduced in people with an ED [ 3 , 106 ]. It is important to consider associations between QoL, ED symptomatology and treatment outcome. Evidence-based treatments have demonstrated positive effects on QoL in addition to reduction in ED symptomatology, for example, improvements in QoL and psychological functioning and well-being were seen in response to CBT in a cross-diagnostic sample [ 43 ]. However, a meta-analysis of ED outcome studies found that the QoL of recovered ED patients remained lower than in healthy populations, highlighting the importance of prevention efforts [ 107 ] and restoration of QoL in relapse prevention. These studies highlight the high public health and clinical burden of eating disorders and the need to consider co-occurring medical and psychiatric conditions during comprehensive assessment history-taking, treatment planning and provision.

Treatment factors

Early progression in treatment can provide indication of treatment outcomes. In an RCT comparing Family Based Treatment (FBT) and Adolescent Focused Therapy (AFT) for adolescents with AN, most people who achieved remission at 1 year FU maintained recovery to 4 years FU regardless of treatment arm with remission rates tended to remain stable after 1 year [ 108 ]. The First Episode Rapid Early Intervention for Eating Disorders (FREED) service model for young adults with AN reported significant and rapid clinical improvements in over 53.2% of people compared to 17.9% TAU and also reported more cost-effective treatment [ 109 ]. In a transdiagnostic study comparing inpatient vs outpatient settings, rapid response to treatment (defined here as a clinically meaningful reduction in disorder-specific symptoms within the first ten sessions) was the only outcome predictor accounting for 45.6% of variance in ED symptoms, suggesting future work should evaluate mediators and moderators of rapid response [ 37 ]. A systematic review of outcome predictors and mediators in response to CBT indicated that early behavioural and cognitive change was associated with positive outcomes across ED diagnoses [ 22 ]. Similarly, a recent systematic review and meta-analysis of 20 years of accumulated evidence concluded early response to treatment the most robust predictor of better treatment outcomes, however, only half of people investigated across numerous studies showed early change, and more research was needed to determine outcome predictors [ 110 ]. Ongoing assessment to identify individuals who do not show early response to treatment (defined by healthy weight and absence of ED behaviours at 12 month FU), as well as provision of targeted engagement approaches, may improve outcomes [ 47 ].

Due to the frequent need for medical stabilisation in the early and acute stages of AN, the role of hospitalisation needs to be considered in the evaluation of treatment outcomes. In a large patient cohort study ( n  = 7505) with 5 year FU, a clear trend was observed with the per-patient 5 year cumulated number of inpatient days decreasing by 6% per annum after adjustment for age at diagnosis, parental mental health, and household income. The number of hospital admissions decreased by 2% per year, although there was no change in outpatient visits [ 111 ]. Factors contributing to better outcomes were not identified in this study, but in other research, early change in %EBW and ED psychopathology in adolescent inpatients predicted later change in the same ED variables [ 18 ]. Another study showed longer first admission predicted increased use of the health system in young adults [ 112 ].

In a multicentre RCT there was no difference between higher or lower calorie refeeding on clinical remission or medical hospitalisation to 12 month FU [ 113 ]. A systematic scoping review of 49 studies found adolescent day programs (intensive treatment programmes that do not involve an overnight stay at the treatment facility) can be an effective alternative to inpatient hospitalisation or step up/down in treatment intensity and are generally associated with weight gain and improvements in ED and comorbid psychopathology [ 114 ]. Outcomes in the review were sustained from 3 months to 2 years from EOT; however, due to large variability in the content, structure and theoretical underpinnings of reviewed programs, findings should be interpreted with caution.

Difficulties with emotion regulation are also associated with poor outcome across diagnostic profiles. There is evidence to suggest emotion-focused treatment is beneficial both to emotional functioning and mood as well as ED severity for people with elevated emotion regulation issues at baseline with positive effects lasting up to 5 years FU [ 115 ].

Self-esteem, self-compassion, and motivation

There is little conclusive evidence regarding predictors of poor response to evidence-based treatments [ 22 , 58 ]; however, low self-esteem has been implicated across all ED diagnoses [ 98 , 101 ], particularly AN [ 55 ]. A meta-analysis exploring the role of self-esteem on treatment outcomes indicated that while self-esteem did not predict remission or long-term weight related outcomes, it did mediate progression during inpatient treatment (greater increase in self-esteem during inpatient treatment was associated with higher remission and lower relapse rates at FU) [ 116 ]. Relatedly, high fear of self-compassion was associated with greater severity of ED symptoms in individuals with an active ED, suggesting that a fearful unwillingness to become more self-compassionate, rather than the absence of self-compassion, may lead to more detrimental outcomes [ 117 ].

Greater pre-treatment motivation has also been associated with ED symptom improvement and management of co-occurring anxiety and depression, in a systematic review and meta-analysis of 42 longitudinal studies [ 118 ]. Therapeutic interventions that include enhancement of motivation, self-esteem and self-compassion have been shown across studies to improve treatment outcomes across diagnostic profiles [ 117 ].

Relapse prevention programs

Whilst the role of treatment is crucial in the alleviation of symptoms and restoration of wellbeing, active provision of evidence-based post-treatment recovery care may be an important determining factor in relapse prevention. Research suggests the period in which individuals are at greatest risk of relapse is between four and nine-months following discharge [ 35 ], with between 31 and 41% relapsing at one to two years post-discharge [ 62 ].

To reduce readmission among a group of females receiving inpatient treatment for AN at an Australian specialist child and adolescent ED service, a 10 week transition ‘day’ program was developed and evaluated. The delivered program allowed for a ‘step down’ option and was found to have significant benefit for participants, who achieved an average weight gain of over 1 BMI point and decreased ED symptomatology at six-month FU [ 65 ]. Promising findings were also seen in a 6-session post-(inpatient and/or outpatient) treatment relapse prevention program designed by clinicians, parents, and patients in the Netherlands, which included a take-home workbook and appointments up to 18 months (frequency dependent on patient progress). Evaluated with young people with AN-R and AN-BP, 70% maintained post-discharge recovery to the end of the study period [ 36 ]. Such programs were evaluated in the context of a comprehensive specialist service with no control group comparison to measure the impact of the specific intervention, and there was no FU assessment following conclusion of the intervention to assess maintenance. Although more work is needed, these studies indicate the value of targeted relapse prevention programs.

Online relapse prevention programs

There is emerging evidence to support the safety and efficacy of internet-based relapse prevention programs aimed at preventing readmission to intensive ED treatment following discharge. These programs have the potential to be widely disseminated to individuals who may otherwise disengage from ongoing support due to access issues (e.g., living in an underserviced area, financial burden) or personal reasons such as stigma or shame [ 119 , 120 ].

A 9-session (1/month) CBT-based online relapse prevention program for women with AN discharged from inpatient treatment (baseline BMI x̄  = 17.7) found participants who completed the program had significant gains in BMI at end of program ( x̄  = 19.1) while the treatment as usual (TAU) control group did not ( x̄  = 17.7). Of note, participants who were 1–2 sessions short of completing the program maintained a higher BMI ( x̄  = 18.0) than the TAU group, whereas participants with less than 50% completion had a significantly lower BMI than any group including TAU ( x̄  = 17.0) [ 121 ]. A similar CBT-based online program targeted toward women discharged from inpatient treatment for BN found that the intervention group reported 46.0% fewer vomiting episodes compared to TAU, with some improvement in symptom abstinence (intervention group: 21.4%, TAU control = 18.9%), although this finding was not statistically significant [ 122 ].

In Hungary, an internet-based aftercare support program for individuals who had received inpatient or outpatient treatment for BN or related EDNOS in the 12 months prior to the study included information and support offered via 30 min chat sessions with peers and clinicians. Results showed 40.6% of the intervention group reported improvement compared to TAU waitlist controls (24.4%), although this difference was not statistically significant. The study noted that, although on the waitlist for the internet-based aftercare support program, the TAU group could still access additional treatment if so required. Evaluation findings report the program was feasible and well accepted [ 123 ].

Text messaging-based interventions have also been trialled to maintain engagement post-treatment, whereby participants send regular symptom reports to the clinical team with feedback provided. A 12 week ‘mobile therapy’ study with a group of women exiting CBT treatment for BN resulted in significant improvement in binge/purge frequency, ED and depressive symptoms from baseline to FU, with high rates of protocol adherence (87.0%), although there was no control group comparison [ 124 ]. Further evidence was provided in a 16 week weekly symptom report study of women with BN following inpatient discharge, with a significantly larger proportion of the intervention group achieving remission (51%) compared with TAU (36%) at 8 months FU. There was no significant difference between groups in terms of outpatient service use [ 125 ]. Results from these studies conflict with evidence from a systematic review of 15 studies, which was unable to support the effectiveness of text messaging-based programs for people with ED as either a sole or adjunctive component of the intervention [ 126 ]; however, this review noted the lack of a common evaluation framework making comparison difficult.

Despite advances in awareness and treatment, ED, particularly AN, continue to be associated with increased risk of mortality [ 4 ]. Studies identified that focus on the assessment of ED mortality, as well as data from the Global Burden of Disease Study 2016 are discussed in this section. Importantly, there are several different metrics used to report mortality. These include the Standardised Mortality Ratio (SMR), or the number of observed deaths in a cohort versus the number of expected deaths in a reference population (where a rate greater than one is interpreted as excess mortality); Weighted Mortality Ratio (WMR), or the weighted average of age-specific mortality rates per 100,000 persons; Crude Mortality Rate (CMR) , or the number of deaths in a given period divided by the population exposed to risk of death in that period; and Years of Life Lost (YLL), a summary measure of premature mortality calculated by subtracting the age at death from the standard life expectancy in a reference population.

Standardised, weighted, and crude mortality

AN is consistently described as having the highest mortality rate of the ED, but actual rate difference varies between studies. A summary of Standardised Mortality Ratios across studies is presented in Table 3 . SMRs from a meta-analysis suggest that measured mortality of AN is approximately three times as high as for other ED diagnoses, and in a UK study of ED patients ( n  = 1892) accessing services between 1992 and 2004, the SMR for AN was almost five times higher than other ED [ 127 ]. This is consistent with other research (a meta-analysis summarising 41 studies) reporting people with AN were 5.2 [3.7–7.5] times more likely to die prematurely from any cause [ 128 ]. A longitudinal study ( n  = 246) found SMR of AN to be only twice as high compared to BN, but still 6.5 times the rate expected in the general population [ 49 ].

Some studies did not report higher SMR for AN compared to other ED, however, methodological differences need to be considered. For example, some studies reported comparable SMR for AN to other ED, but subthreshold AN cases were included (previously catagorised as EDNOS) which may have reduced the calculated AN SMR [ 104 , 108 ]. In a British study using English National Hospital Episodes Statistics (2001–2009) comparing AN and BN, little difference in SMRs was reported [ 132 ]. The diagnosis of BN was less likely than other diagnosis to be recorded as the primary diagnosis and may not have been representative.

In a 22 year trial FU of a large sample of inpatients treated for BN, 2.4% had died [ 45 ]; the CMR for BN was 0.32% [ 63 ] and in severely malnourished patients, the crude mortality rate rose to 11.5% with SMR 15.9 [CI 95% (11.6–21.4)], just over 5 years post-treatment [ 137 ]. WMR has been found to be 5.1 for AN, 1.7 for BN, and 3.3 for EDNOS. SMRs were 5.86 for AN, 1.93 for BN, 1.92 for EDNOS [ 4 ] and 1.5–1.8 for BED [ 76 ].

Mortality rates in AN were highest during the first year after admission to treatment, while in BN it is in the first two years [ 134 ], with a higher risk in adolescence [ 140 ]. In AN, peak age of risk of death has been reported to be 15 years of age, BN 22 years and EDNOS 18–22 years [ 141 ]. Substance use disorders (including alcohol and/or cannabis) increased mortality in people with eating disorders across the diagnostic profiles [ 142 ].

In ED, peak age of risk for males may be earlier than females [ 141 ]. SMRs are higher for males (SMR = 7.24; 95% CI 6.58–7.96) relative to females (SMR = 4.59; 95% CI 4.34–4.85) overall, and in all age groups [ 131 ]. This may be due to the lower likelihood of males to self-identify or be identified with ED resulting in treatment delays and higher severity of illness when finally seeking help [ 131 ]. In mortality research conducted with a male-only sample, similarly high SMRs for males with BN and particularly AN as in majority female samples [ 2 ] were reported; however, mortality rates of EDNOS in males were considerably higher than those reported in female-dominant or female-only samples. Moreover, a case-controlled study found there was a sex difference across all diagnostic categories in CMR, with male to female being 15–5% in AN, 8–3% in BN, and 4–3% in EDNOS, but there were no significant sex differences in SMR for any diagnostic group, with males showing a shorter survival time after onset [ 2 ]. Researchers have suggested that increased mortality in males could be due to several factors, including reluctance to seek treatment and current treatment approaches being less effective in males [ 138 ]. Further research in males with ED is required to better understand the impact and response in male patients. Regardless of the mortality metric used, these studies indicate the vital importance of considering elevated mortality risk across the range of ED diagnoses.

Years of life lost/years lived with disability

The Global Burden of Disease Study 2016 reported that YLL due to premature death attributable to AN was 0.4 per 100,000. No YLL were attributed to BN; however, cause-specific mortality (CSM)—where each death is attributed to a single underlying cause—was, per thousand, 0.5 for AN (with a 2.9% increase from 1980 to 2016) and 0.1 for BN (21.8% increase from 1980 to 2016) [ 143 ]. The 2019 extension advocated for the inclusion of BED and OSFED in the Global Burden of Disease Study, previously excluded, as both diagnostic groups accounted for the majority of global ED cases and accounted for an unrepresented 41.9 million people living with ED [ 144 ].

Estimates are that over 3.3 million healthy life years are lost per year worldwide due to eating disorders. Years lived with a disability (YLDs) have increased from 2007 to 2017 for both AN (6.2% increase) and BN (10.3%), a higher rate than other mental disorders (− 0.1%). ED outcomes include reduced self-reported quality of life and estimated health care costs at 48% higher than for the general population [ 3 ].

Risk factors

Little is known about specific risk factors for mortality, although some variables have been reported in the literature. People who receive inpatient treatment for AN have more than five to seven times mortality risk when matched to age and gender and compared to other ED diagnoses [ 3 , 131 , 133 ]. For individuals receiving AN or BN treatment in outpatient settings, the risk is still twice that of controls [ 3 ]. Older age of presentation is a significant risk; adult presentations are associated with much higher mortality rates than adolescent presentations likely due to longer duration of illness at presentation, higher rates of medical and psychiatric complications and less engagement in treatment [ 4 , 28 , 68 , 137 , 139 ]. Higher mortality rates (especially in AN) are associated with lower BMI, longer duration of illness at service presentation [ 4 , 49 , 68 , 137 , 139 ], diuretic use [ 68 ], and occurrence of an in-hospital suicide attempt [ 68 , 137 ]. Certain treatment factors may be associated with higher risk of mortality, including transfer to medical intensive care unit, discharge against medical advice, and shorter hospital stays [ 137 ]. Other factors associated with increased risk of mortality include poor psychosocial functioning, substance use [ 28 , 49 ] and absence of family ED history [ 28 ].

Cause of death

Results from a large prospective 20 year (1985–2005) longitudinal study of individuals admitted to inpatient services in Germany ( n  = 5839) showed people with AN were likely to die from health issues caused by their disorder, most commonly circulatory failure, cachexia, and multiple organ failure [ 133 ]. Other studies have identified somatic risk factors including anaemia, dysnatremia, infection, cardiac complications and haematological comorbidities [ 137 ]. A 2021 study reported rates of medical complications for severe AN, which included anaemia (79%), neutropenia (53.9%), hypertransaminasemia (53.7%), osteoporosis (46.3%), hypokalemia (39.5%), hypophosphatemia (26%), hypoglycaemia (13.8%), infectious complications (24.3%), cardiac dysfunction (7.1%), and proven gelatinous bone marrow transformation (6.5%). Five (1.4%) of the patients in this study died of the following causes: septic shock of pulmonary origin ( n  = 1), septic shock of urinary origin ( n  = 1) and suicide ( n  = 3) [ 145 ].

Suicide is the most common non-natural cause of death in people with AN, BN, BED and EDNOS [ 133 ]. High rates of suicidality were reported in a meta-analysis of 36 studies published between 1966 and 2010 with data showing one in five individuals who died from an ED did so by suicide [ 4 ]. Risk of suicide may be particularly elevated in AN [Hazard Ratio (HR) 5.07; 95% CI 1.37–18.84] and BN (HR 6.07; 95% CI 2.47–14.89) even when specialised treatments are available [ 134 ]: people with AN are 18.1 [11.5–28.7] times more likely to die by suicide than 15–34 year old females in the general population [ 128 ]. This is supported by results from a meta-review exploring risk of all-cause and suicide across major mental disorders. 1.7 million patients and over a quarter of a million deaths were examined, finding all mental health disorders had an increased mortality rate to the general population; however, substance use and AN were the highest, translating into 10–20 year reductions in life expectancy, with borderline personality disorder, AN, depression and bipolar disorder having the highest suicide risk [ 146 ].

This rapid review, which synthesised the available literature on ED remission, relapse and recovery rates including associated moderating and mediating variables such as psychosocial and treatment characteristics, highlighted significant challenges of synthesising outcome literature. This includes a wide variety of ways in which key outcomes ‘remission’, ‘relapse’ and ‘recovery’ are not only defined but also how they are measured and analysed. There is no consensus among clinical or research communities on these definitions for any of the ED diagnoses [ 30 , 31 , 94 ]; thus, comparison between studies is challenging.

As EDs have amongst the highest rates of mortality of the mental health disorders, including one in five deaths caused by suicide, research into preventable causes of death, mitigatable risk, prevention and treatment efficacy is of paramount importance. It is noteworthy that current reported YLL and YLD for ED are likely an underestimate due to lack of robust epidemiological data, methodological limitations of burden of disease studies, absence of the illness group from national surveys and underreporting of mortality [ 147 ].

‘Relapse’ is typically defined by a return of symptoms after a period of reduced symptomatology; however, reviewed studies report a variety of methods to measure this, including multidisciplinary healthcare team assessment, scores on standardised psychological and behavioural interviews or questionnaires, weight criteria (including BMI or %EBW), reported eating disorder behaviours, meeting DSM (IV or V) diagnostic criteria, or a combination of the above. More difficult is determining if there is a difference between ‘remission’ and ‘recovery’, with remission usually determined by an absence of diagnostic symptomatology (again, characterised by a variety of methods), and recovery an improvement in overall functioning. Many studies report remission and recovery interchangeably, and very few incorporate returns to psychosocial functioning and QoL post alleviation of symptoms [ 29 ]. More standardised definitions may progress research [ 148 ] by allowing direct comparison between outcome studies, improving the ability of future investigations to predict and report relapse versus recovery rates and to comprehensively evaluate intervention and relapse prevention approaches.

An additional challenge across studies is a highly variable period between initial assessment or baseline and the time at which ‘outcome’ is assessed—ranging from as little as one week up to 25 years. As rates of relapse increase with illness progression, relatively short FU periods may compromise the understanding of true long-term outcomes. Longer-term FU studies are crucial to understand optimised models of care for sustained recovery and wellbeing.

Along with illness progression over time in individuals, the shift of diagnostic profiles among the individual may differ the definition of relapse or remission and thus impacts on outcome measures. Most research protocols adopt a firm inclusion/exclusion criterion, focusing on specific diagnostic profiles; however, findings from this review suggest considering a transdiagnostic approach in outcomes research which may better reflect the potentially transient nature of ED symptomatology [ 44 ]. This may have implications for diagnoses such as OSFED, potentially a transient category [ 21 ], rather than categorisation in or out of full ED diagnostic syndromes. Identification and consideration of transdiagnostic profiles, combined ED presentations and co-occurring mental health conditions should be considered in the long-term management and monitoring of individuals.

Studies within this review reported on cohorts of individuals with a formal diagnosis and research conducted within treatment settings. However, previous research has suggested that incidence rates within the community are considerable, and yet help-seeking of any type for a problem related to ED symptoms is uncommon, ranging between 22 and 40% [ 106 ] and there can be a significant time delay from first symptom experience [ 69 ]. A recent large community survey of the impact of COVID-19 on people with ED reported up to 70% of people who experienced ED symptoms were not in treatment [ 149 ] suggesting a significant proportion of people with an ED are not captured within this outcome review. Outcomes for this population are largely unknown [ 150 ] but preliminary research suggests they may be less favourable [ 151 , 152 ].

Improved QoL has been shown to be a significant predictor of positive outcome and is an opportunity for broader scope interventions for people with ED [ 107 ], and yet consistent and more wholistic markers of life quality are rarely integrated into research or clinical decision making [ 153 , 154 ]. It is also noted that outcome determinants in the reviewed studies are predominantly biometric (e.g., weight) and ED symptom related, whereas qualitative lived experience evidence suggests a broader range of person-centred metrics should be used to measure outcome. These include supportive relationships (e.g., receiving support, advice and encouragement from others, including family, friends, and/or professional carers), sense of hope, identity, meaning and purpose, feelings of empowerment and self-compassion [ 155 ]. Involvement of those to whom the work pertains (i.e., individuals with lived experience) is essential in future outcomes research to add richness and utility to theoretical frameworks, methodological approaches and conclusions [ 156 ].

Key findings

ED frequently take a chronic course, with less than half of individuals achieving recovery at long-term FU [ 41 , 44 , 52 ]. Between 30 and 41% of people will relapse within two years of receiving treatment [ 35 , 61 ], and between 20 and 61% will experience more than one type of eating disorder [ 7 , 63 , 64 ]. As with much of the extant ED literature, most outcome research has been conducted in AN. Restrictive ED are consistently associated with the poorest prognosis. This review identified recovery rates in the range of 18–60% for AN and an average length of illness of between 6.5 and 14 years [ 41 , 56 ]. Binge/purge symptomatology within AN is associated with worse outcome [ 20 , 56 ]. Recovery rates for BN are slightly more optimistic at 35–59% [ 7 , 45 , 63 , 157 ], and similarly for BED at 37–77% [ 79 , 80 , 82 ]. There is limited data available on outcomes in ARFID, OSFED, and UFED.

Factors associated with a more positive long-term outcome include lower age of presentation [ 28 , 61 ], shorter duration of illness at first presentation [ 69 , 93 , 94 ], higher pre-treatment motivation to recover [ 116 ], and demonstrated early response to treatment [ 18 , 75 , 110 , 112 ]. Factors associated with poorer outcome are lower BMI at presentation [ 93 ], presence of binge/purge symptomatology [ 20 , 30 , 44 , 56 ], and presence of comorbid psychiatric condition/s such as depression, anxiety, or personality disorder [ 44 , 47 , 51 , 55 , 67 , 98 , 99 ]. Males, LGBTQIA + community [ 104 , 105 ], neurodiversity [ 102 ], individuals from non-white/ethnic backgrounds, and those from lower socioeconomic brackets or rural/remote communities are also more likely to experience a poor outcome [ 18 , 72 , 76 , 77 ].

Relapse following ED treatment is common [ 11 , 35 , 36 , 62 , 148 ] and is most likely to occur 4–9 months post discharge [ 35 ]. Up to 41% of individuals will relapse by the second-year post-discharge [ 62 ]. Aftercare relapse prevention programs, including online and face-to-face initiatives such as text-message based interventions, daily feedback to clinicians and intensive day programs have been shown to increase chance of maintaining recovery [ 121 , 123 – 125 ]. The implementation of such programs may be key to improving long-term recovery rates particularly for those individuals who may otherwise disengage from treatment for access reasons (such as living in an underserviced area) or because of the stigma of engaging with mental health care [ 119 , 120 ]. There is emerging evidence in the effectiveness of online intervention for preventing relapse and promoting treatment gains when individuals are motivated to change; however, evidence is not conclusive potentially due to the high variability of the interventions and evaluations of such programs.

ED are associated with unacceptably high mortality rates, and particularly high risk of suicide [ 128 , 133 ]. Of the ED, AN carries the highest mortality risk [ 49 , 127 , 128 ]. Standardised mortality ratios (SMRs) identified by this review ranged between 1.2 and 15.9 for AN; 1.4 and 4.8 for BN; 1.01 and 3.3 for BED; and 1.3 to 4.7 for EDNOS/OSFED [ 2 , 4 , 20 , 121 , 127 , 128 , 132 , 134 , 135 , 137 , 139 ]. Factors associated with increased risk of mortality include having received inpatient treatment [ 3 , 131 , 133 ], longer duration of untreated illness [ 4 , 28 , 68 , 68 , 137 , 139 ] and lower BMI at presentation [ 4 , 49 , 68 , 137 , 139 ]. Males are at higher risk of death than females [ 2 ].

Strengths and limitations

This rapid review has several strengths inherent to the methodological approach of the series, conducted to inform the Australian Eating Disorders Research and Translation Strategy 2021–2031 [ 1 ]. The RR process broadly assessed all available high-level evidence peer-reviewed literature swiftly [ 24 ], included all diagnostic categories covering transdiagnostic continuums, considered the full demographic range available and reported a variety of methodological designs including clinical trials (across a variety of settings), systematic reviews, meta-analyses, and population-level research. It aimed to provide the most comprehensive and current review possible with coordination of complex findings into a more cohesive structure. It was noted where applicable the limitations of conclusions drawn from this review, such as the widely disparate definitions and measurements for key outcome data (i.e., remission, relapse, and recovery rates), crossover from DSM-IV to DSM-V criteria (due to timeframe of search), vastly different periods of follow up impacting findings, and conflicting evidence. As with the series of rapid reviews, the inclusion criteria of evidence may have potentially excluded relevant evidence, and it is noted that evidence is always emerging.

This RR of outcomes in ED identified several gaps in current knowledge and provides direction for future strategic research directives, specifically, defining the key outcomes of remission, recovery, and relapse, with consensus of determinants and inclusion of broader QoL measures and lived experience. Identifying and refining risk factors, mediating and moderating factors that may influence outcomes is ongoing, with longer-term FU research needed to track remission versus relapse, diagnostic crossover and optimisation of treatment engagement and recovery. Regarding mortality literature, this review noted considerable gaps [ 146 ], with variety reporting methods, a paucity of research between population level reporting and small hospital outcome studies, and minimal investigation into life circumstances relating to death, especially as many of these deaths may be preventable. With low rates of remission despite evidence-based care and high risk of mortality, especially for AN, it is strongly recommended that focused, long-term follow-up research is prioritised for people with ED.

Availability of data and materials

Not applicable—all citations provided.

Abbreviations

Atypical anorexia nervosa

Adolescent focused therapy

• Anorexia nervosa

Anorexia nervosa binge/purge subtype

Anorexia nervosa restricting subtype

Avoidant restrictive food intake disorder

• Binge eating disorder

Body mass index

• Bulimia nervosa

Behavioural weight loss therapy

Cognitive behaviour therapy

Enhanced cognitive behavioural therapy

Crude mortality rate

Diagnostic and statistical manual of mental disorders

Expected body weight

• Eating disorders

Eating disorder examination questionnaire

Eating disorder not otherwise specified

Eating disorder not otherwise specified-anorectic type

Eating disorder not otherwise specified-bulimic type

End of treatment

Family-based therapy

Healthcare management advisors

Health related quality of life

Integrative cognitive-affective therapy

InsideOut Institute

Interpersonal therapy

Major depressive disorder

Objective binge eating

Obsessive compulsive disorder

Other specified feeding or eating disorder

Quality of life

Randomised controlled trial

National eating disorder research & translation strategy rapid review

Standardised mortality ratio

Substance use disorder

Treatment as usual

Unspecified feeding or eating disorder

Weighted mortality ratio

Years of life lost

Years lived with a disability

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Acknowledgements

The InsideOut Institute is a collaboration between the University of Sydney and Sydney Local Health District. We thank all the staff from the Institution for their support of this significant project. The authors would like to thank and acknowledge the hard work of Healthcare Management Advisors (HMA) who were commissioned to undertake the Rapid Review. Additionally, the authors would like to thank all members of the consortium and consultation committees for their advice, input, and considerations during the development process. Further, a special thank you to the carers, consumers and lived experience consultants that provided input to the development of the Rapid Review and wider national Eating Disorders Research & Translation Strategy. Finally, thank you to the Australian Government—Department of Health for their support of the current project. National Eating Disorder Research Consortium Members (alphabetical order of surname): *indicates named authors. Phillip Aouad InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Sarah Barakat InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Robert Boakes School of Psychology, Faculty of Science, University of Sydney, NSW Australia. Leah Brennan School of Psychology and Public Health, La Trobe University, Victoria, Australia. Emma Bryant* InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Susan Byrne School of Psychology, Western Australia, Perth, Australia. Belinda Caldwell Eating Disorders Victoria, Victoria, Australia. Shannon Calvert Perth, Western Australia, Australia. Bronny Carroll InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. David Castle Medicine, Dentistry and Health Sciences, University of Melbourne, Victoria, Australia. Ian Caterson School of Life and Environmental Sciences, University of Sydney, Sydney, New South Wales, Australia. Belinda Chelius Eating Disorders Queensland, Brisbane, Queensland, Australia. Lyn Chiem Sydney Local Health District, New South Wales Health, Sydney, Australia. Simon Clarke Westmead Hospital, Sydney, New South Wales, Australia. Janet Conti Translational Health Research Institute, Western Sydney University, Sydney NSW Australia. Lexi Crouch Brisbane, Queensland, Australia. Genevieve Dammery InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Natasha Dzajkovski InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Jasmine Fardouly School of Psychology, University of New South Wales, Sydney, New South Wales, Australia. John Feneley New South Wales Health, New South Wales, Australia. Amber-Marie Firriolo University of Sydney, NSW Australia. Nasim Foroughi Translational Health Research Institute, Western Sydney University, Sydney NSW Australia. Mathew Fuller-Tyszkiewicz School of Psychology, Faculty of Health, Deakin University, Victoria, Australia. Anthea Fursland School of Population Health, Faculty of Health Sciences, Curtain University, Perth, Australia. Veronica Gonzalez-Arce InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Bethanie Gouldthorp Hollywood Clinic, Ramsay Health Care, Perth, Australia. Kelly Griffin InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Scott Griffiths Melbourne School of Psychological Sciences, University of Melbourne, Victoria, Australia. Ashlea Hambleton InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Amy Hannigan Queensland Eating Disorder Service, Brisbane, Queensland, Australia. Mel Hart Hunter New England Local Health District, New South Wales, Australia. Susan Hart St Vincent’s Hospital Network Local Health District, Sydney, New South Wales, Australia. Phillipa Hay Translational Health Research Institute, Western Sydney University, Sydney NSW Australia. Ian Hickie Brain and Mind Centre, University of Sydney, Sydney, Australia. Francis Kay-Lambkin School of Medicine and Public Health, University of Newcastle, New South Wales, Australia. Ross King School of Psychology, Faculty of Health, Deakin University, Victoria, Australia. Michael Kohn Paediatrics & Child Health, Children's Hospital, Westmead, Sydney, Australia. Eyza Koreshe InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Isabel Krug Melbourne School of Psychological Sciences, University of Melbourne, Victoria, Australia. Jake Linardon School of Psychology, Faculty of Health, Deakin University, Victoria, Australia. Randall Long College of Medicine and Public Health, Flinders University, South Australia, Australia. Amanda Long Exchange Consultancy, Redlynch, New South Wales, Australia. Sloane Madden Eating Disorders Service, Children’s Hospital at Westmead, Sydney, New South Wales, Australia. Sarah Maguire* InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Danielle Maloney InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Peta Marks InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Sian McLean The Bouverie Centre, School of Psychology and Public Health, La Trobe University, Victoria, Australia. Thy Meddick Clinical Excellence Queensland, Mental Health Alcohol and Other Drugs Branch, Brisbane, Queensland, Australia. Jane Miskovic-Wheatley* InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Deborah Mitchison Translational Health Research Institute, Western Sydney University, Sydney NSW Australia. Richard O’Kearney College of Health & Medicine, Australian National University, Australian Capital Territory, Australia. Shu Hwa Ong* InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Roger Paterson ADHD and BED Integrated Clinic, Melbourne, Victoria, Australia. Susan Paxton La Trobe University, Department of Psychology and Counselling, Victoria, Australia. Melissa Pehlivan InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Genevieve Pepin School of Health & Social Development, Faculty of Health, Deakin University, Geelong, Victoria, Australia. Andrea Phillipou Swinburne Anorexia Nervosa (SWAN) Research Group, Centre for Mental Health, School of Health Sciences, Swinburne University, Victoria, Australia. Judith Piccone Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia. Rebecca Pinkus School of Psychology, Faculty of Science, University of Sydney, NSW Australia. Bronwyn Raykos Centre for Clinical Interventions, Western Australia Health, Perth, Western Australia, Australia. Paul Rhodes School of Psychology, Faculty of Science, University of Sydney, NSW Australia. Elizabeth Rieger College of Health & Medicine, Australian National University, Australian Capital Territory, Australia. Karen Rockett New South Wales Health, New South Wales, Australia. Sarah-Catherine Rodan InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Janice Russell Central Clinical School Brain & Mind Research Institute, University of Sydney, New South Wales, Sydney. Haley Russell InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Fiona Salter Ramsay Health Care, Perth, Australia. Susan Sawyer Department of Paediatrics, The University of Melbourne, Australia. Beth Shelton National Eating Disorders Collaboration, Victoria, Australia. Urvashnee Singh The Hollywood Clinic Hollywood Private Hospital, Ramsey Health, Perth, Australia. Sophie Smith Sydney, New South Wales, Australia. Evelyn Smith Translational Health Research Institute, Western Sydney University, Sydney NSW Australia. Karen Spielman InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Sarah Squire The Butterfly Foundation, Sydney, Australia. Juliette Thomson The Butterfly Foundation, Sydney, Australia. Stephen Touyz* InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Ranjani Utpala The Butterfly Foundation, Sydney, Australia. Lenny Vartanian School of Psychology, University of New South Wales, Sydney, New South Wales, Australia. Sabina Vatter* InsideOut Institute, Central Clinical School, Faculty of Medicine and Health, University of Sydney, NSW Australia. Andrew Wallis Eating Disorder Service, The Sydney Children’s Hospital Network, Westmead Campus, Sydney, Australia. Warren Ward Department of Psychiatry, University of Queensland, Brisbane, Australia. Sarah Wells University of Tasmania, Tasmania, Australia. Eleanor Wertheim School of Psychology and Public Health, La Trobe University, Victoria, Australia. Simon Wilksch College of Education, Psychology and Social Work, Flinders University, South Australia, Australia. Michelle Williams Royal Hobart, Tasmanian Health Service, Tasmania, Australia.

The RR was in-part funded by the Australian Government Department of Health in partnership with other national and jurisdictional stakeholders. As the organisation responsible for overseeing the National Eating Disorder Research & Translation Strategy, InsideOut Institute commissioned Healthcare Management Advisors to undertake the RR as part of a larger, ongoing, project. Role of Funder: The funder was not directly involved in informing the development of the current review.

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Faculty of Medicine and Health, InsideOut Institute for Eating Disorders, University of Sydney, Level 2, Charles Perkins Centre (D17), Sydney, NSW, 2006, Australia

Jane Miskovic-Wheatley, Emma Bryant, Shu Hwa Ong, Sabina Vatter, Phillip Aouad, Sarah Barakat, Emma Bryant, Bronny Carroll, Genevieve Dammery, Natasha Dzajkovski, Veronica Gonzalez-Arce, Kelly Griffin, Ashlea Hambleton, Eyza Koreshe, Sarah Maguire, Danielle Maloney, Peta Marks, Jane Miskovic-Wheatley, Shu Hwa Ong, Melissa Pehlivan, Sarah-Catherine Rodan, Haley Russell, Karen Spielman, Stephen Touyz, Sabina Vatter, Stephen Touyz & Sarah Maguire

Sydney Local Health District, Sydney, Australia

Healthcare Management Advisors, Melbourne, Australia

School of Psychology, Faculty of Science, University of Sydney, Sydney, NSW, Australia

Robert Boakes, Rebecca Pinkus & Paul Rhodes

School of Psychology and Public Health, La Trobe University, Victoria, Australia

Leah Brennan & Eleanor Wertheim

School of Psychology, Perth, Western Australia, Australia

Susan Byrne

Eating Disorders Victoria, Victoria, Australia

Belinda Caldwell

Perth, Australia

Shannon Calvert

Medicine, Dentistry and Health Sciences, University of Melbourne, Victoria, Australia

David Castle

School of Life and Environmental Sciences, University of Sydney, Sydney, NSW, Australia

Ian Caterson

Eating Disorders Queensland, Brisbane, QLD, Australia

Belinda Chelius

Sydney Local Health District, New South Wales Health, Sydney, Australia

Westmead Hospital, Sydney, NSW, Australia

Simon Clarke

Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia

Janet Conti, Nasim Foroughi, Phillipa Hay, Deborah Mitchison & Evelyn Smith

Brisbane, Australia

Lexi Crouch

School of Psychology, University of New South Wales, Sydney, NSW, Australia

Jasmine Fardouly & Lenny Vartanian

University of Sydney, Sydney, NSW, Australia

Carmen Felicia & Amber-Marie Firriolo

New South Wales Health, Sydney, NSW, Australia

John Feneley & Karen Rockett

School of Psychology, Faculty of Health, Deakin University, Victoria, Australia

Mathew Fuller-Tyszkiewicz & Ross King

School of Population Health, Faculty of Health Sciences, Curtain University, Perth, Australia

Anthea Fursland

Hollywood Clinic, Ramsay Health Care, Perth, Australia

Bethanie Gouldthorp & Jake Linardon

Melbourne School of Psychological Sciences, University of Melbourne, Victoria, Australia

Scott Griffiths & Isabel Krug

Queensland Eating Disorder Service, Brisbane, QLD, Australia

Amy Hannigan

Hunter New England Local Health District, New Lambton, NSW, Australia

St Vincent’s Hospital Network Local Health District, Sydney, NSW, Australia

Brain and Mind Centre, University of Sydney, Sydney, Australia

School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia

Francis Kay-Lambkin

Westmead Hospital, Sydney, Australia

Michael Kohn

College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia

Randall Long

Exchange Consultancy, Redlynch, NSW, Australia

Amanda Long

Eating Disorders Service, Children’s Hospital at Westmead, Sydney, NSW, Australia

Sloane Madden

The Bouverie Centre, School of Psychology and Public Health, La Trobe University, Victoria, Australia

Sian McLean

Clinical Excellence Queensland, Mental Health Alcohol and Other Drugs Branch, Brisbane, QLD, Australia

Thy Meddick

College of Health and Medicine, Australian National University, Canberra, ACT, Australia

Richard O’Kearney & Elizabeth Rieger

ADHD and BED Integrated Clinic, Melbourne, VIC, Australia

Roger Paterson

Department of Psychology and Counselling, La Trobe University, Victoria, Australia

Susan Paxton

School of Health and Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia

Genevieve Pepin

Swinburne Anorexia Nervosa (SWAN) Research Group, Centre for Mental Health, School of Health Sciences, Swinburne University, Victoria, Australia

Andrea Phillipou

Children’s Health Queensland Hospital and Health Service, Brisbane, QLD, Australia

Judith Piccone

Centre for Clinical Interventions, Western Australia Health, Perth, WA, Australia

Bronwyn Raykos

Central Clinical School Brain & Mind Research Institute, University of Sydney, Sydney, NSW, Australia

Janice Russell

Ramsay Health Care, Perth, Australia

Fiona Salter

Department of Paediatrics, The University of Melbourne, Parkville, Australia

Susan Sawyer

National Eating Disorders Collaboration, Victoria, Australia

Beth Shelton

The Hollywood Clinic Hollywood Private Hospital, Ramsey Health, Perth, Australia

Urvashnee Singh

Sydney, Australia

Sophie Smith

The Butterfly Foundation, Sydney, Australia

Sarah Squire, Juliette Thomson & Ranjani Utpala

Eating Disorder Service, The Sydney Children’s Hospital Network, Westmead Campus, Sydney, Australia

Andrew Wallis

Department of Psychiatry, University of Queensland, Brisbane, Australia

Warren Ward

University of Tasmania, Hobart, TAS, Australia

Sarah Wells

College of Education, Psychology and Social Work, Flinders University, Adelaide, SA, Australia

Simon Wilksch

Royal Hobart, Tasmanian Health Service, Hobart, TAS, Australia

Michelle Williams

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National Eating Disorder Research Consortium

• Phillip Aouad
• , Sarah Barakat
• , Robert Boakes
• , Leah Brennan
• , Emma Bryant
• , Susan Byrne
• , Belinda Caldwell
• , Shannon Calvert
• , Bronny Carroll
• , David Castle
• , Ian Caterson
• , Belinda Chelius
• , Lyn Chiem
• , Simon Clarke
• , Janet Conti
• , Lexi Crouch
• , Genevieve Dammery
• , Natasha Dzajkovski
• , Jasmine Fardouly
• , Carmen Felicia
• , John Feneley
• , Amber-Marie Firriolo
• , Nasim Foroughi
• , Mathew Fuller-Tyszkiewicz
• , Anthea Fursland
• , Veronica Gonzalez-Arce
• , Bethanie Gouldthorp
• , Kelly Griffin
• , Scott Griffiths
• , Ashlea Hambleton
• , Amy Hannigan
• , Susan Hart
• , Phillipa Hay
• , Ian Hickie
• , Francis Kay-Lambkin
• , Ross King
• , Michael Kohn
• , Eyza Koreshe
• , Isabel Krug
• , Jake Linardon
• , Randall Long
• , Amanda Long
• , Sloane Madden
• , Sarah Maguire
• , Danielle Maloney
• , Peta Marks
• , Sian McLean
• , Thy Meddick
• , Jane Miskovic-Wheatley
• , Deborah Mitchison
• , Richard O’Kearney
• , Shu Hwa Ong
• , Roger Paterson
• , Susan Paxton
• , Melissa Pehlivan
• , Genevieve Pepin
• , Andrea Phillipou
• , Judith Piccone
• , Rebecca Pinkus
• , Bronwyn Raykos
• , Paul Rhodes
• , Elizabeth Rieger
• , Sarah-Catherine Rodan
• , Karen Rockett
• , Janice Russell
• , Haley Russell
• , Fiona Salter
• , Susan Sawyer
• , Beth Shelton
• , Urvashnee Singh
• , Sophie Smith
• , Evelyn Smith
• , Karen Spielman
• , Sarah Squire
• , Juliette Thomson
• , Stephen Touyz
• , Ranjani Utpala
• , Lenny Vartanian
• , Sabina Vatter
• , Andrew Wallis
• , Warren Ward
• , Sarah Wells
• , Eleanor Wertheim
• , Simon Wilksch
•  & Michelle Williams

Contributions

AL carried out and wrote the initial review from the first search; JMW conducted subsequent reviews, analysed results, wrote the first manuscript and the final edit; EB, SHO and SV contributed to specific sections, detailed tables and figures, responded to review comments and contributed to ongoing drafts to manuscript completion; the National Eating Disorder Research Consortium reviewed and provided expert feedback; ST and SM provided project direction, methodological design, comprehensively reviewed the manuscript and provided overall supervision and leadership. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Jane Miskovic-Wheatley .

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Not applicable.

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Competing interests.

ST receives royalties from Hogrefe and Huber, McGraw Hill and Taylor and Francis for published books/book chapters. He has received honoraria from the Takeda Group of Companies for consultative work, public speaking engagements and commissioned reports. He has chaired their Clinical Advisory Committee for Binge Eating Disorder. He is the Editor in Chief of the Journal of Eating Disorders. He is a committee member of the National Eating Disorders Collaboration as well as the Technical Advisory Group for Eating Disorders. AL undertook work on this RR while employed by HMA. JMW and SM are guest editors of the special issue “Improving the future by understanding the present: evidence reviews for the field of eating disorders.”

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Supplementary Information

Additional file 1: fig. s1..

PRISMA flow diagram.

Additional file 2: Table S1.

Studies included in the Rapid Review.

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Miskovic-Wheatley, J., Bryant, E., Ong, S.H. et al. Eating disorder outcomes: findings from a rapid review of over a decade of research. J Eat Disord 11 , 85 (2023). https://doi.org/10.1186/s40337-023-00801-3

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Received : 28 February 2023

Accepted : 05 May 2023

Published : 30 May 2023

DOI : https://doi.org/10.1186/s40337-023-00801-3

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The American Psychiatric Association Practice Guideline for the Treatment of Patients With Eating Disorders

• Catherine Crone , M.D. (Chair) ,
• Laura J. Fochtmann , M.D., M.B.I. (Vice-Chair, Methodologist) ,
• Evelyn Attia , M.D. ,
• Robert Boland , M.D. ,
• Javier Escobar , M.D. ,
• Victor Fornari , M.D. ,
• Neville Golden , M.D. ,
• Angela Guarda , M.D. ,
• Maga Jackson-Triche , M.D. ,
• Laurie Manzo , M.Ed., R.D., L.D.N. ,
• Margherita Mascolo , M.D. ,
• Karen Pierce , M.D. ,
• Megan Riddle , M.D., Ph.D., M.S. ,
• Andreea Seritan , M.D. ,
• Blair Uniacke , M.D. ,
• Nancy Zucker , Ph.D. , Systematic Review:
• Joel Yager , M.D. ,
• Thomas J. Craig , M.D. ,
• Seung-Hee Hong ,
• Jennifer Medicus

Search for more papers by this author

At its April 2021 meeting, the American Psychiatric Association (APA) Board of Trustees approved “The American Psychiatric Association Practice Guideline for the Treatment of Patients With Eating Disorders.” The full guideline is available at APA’s Practice Guidelines website.

The goal of this guideline is to improve the quality of care and treatment outcomes for patients with eating disorders, as defined by the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR; American Psychiatric Association 2022 ). Since publication of the last American Psychiatric Association (APA) practice guideline on eating disorders ( American Psychiatric Association 2006 ), there have been many studies on psychotherapies for individuals with these diagnoses as well as some studies on pharmacotherapies. Despite this, there are still substantial gaps in the availability and use of evidence-based treatments for individuals with an eating disorder ( Kazdin et al. 2017 ). This practice guideline aims to help clinicians enhance care for their patients by reviewing current evidence and providing evidence-based statements ( Box 1 ) that are intended to increase knowledge, improve assessment, and optimize treatment of eating disorders.

Box 1. Guideline Statements a

Assessment and determination of treatment plan.

APA recommends (1C) screening for the presence of an eating disorder as part of an initial psychiatric evaluation.

APA recommends (1C) that the initial evaluation of a patient with a possible eating disorder include assessment of

the patient’s height and weight history (e.g., maximum and minimum weight, recent weight changes);

presence of, patterns in, and changes in restrictive eating, food avoidance, binge eating, and other eating-related behaviors (e.g., rumination, regurgitation, chewing and spitting);

patterns and changes in food repertoire (e.g., breadth of food variety, narrowing or elimination of food groups);

presence of, patterns in, and changes in compensatory and other weight control behaviors, including dietary restriction, compulsive or driven exercise, purging behaviors (e.g., laxative use, self-induced vomiting), and use of medication to manipulate weight;

percentage of time preoccupied with food, weight, and body shape;

prior treatment and response to treatment for an eating disorder;

psychosocial impairment secondary to eating or body image concerns or behaviors; and

family history of eating disorders, other psychiatric illnesses, and other medical conditions (e.g., obesity, inflammatory bowel disease, diabetes mellitus).

APA recommends (1C) that the initial psychiatric evaluation of a patient with a possible eating disorder include weighing the patient and quantifying eating and weight control behaviors (e.g., frequency, intensity, or time spent on dietary restriction, binge eating, purging, exercise, and other compensatory behaviors).

APA recommends (1C) that the initial psychiatric evaluation of a patient with a possible eating disorder identify co-occurring health conditions, including co-occurring psychiatric disorders.

APA recommends (1C) that the initial psychiatric evaluation of a patient with a possible eating disorder include a comprehensive review of systems.

APA recommends (1C) that the initial physical examination of a patient with a possible eating disorder include assessment of vital signs, including temperature, resting heart rate, blood pressure, orthostatic pulse, and orthostatic blood pressure; height, weight, and BMI (or percent median BMI, BMI percentile, or BMI Z-score for children and adolescents); and physical appearance, including signs of malnutrition or purging behaviors.

APA recommends (1C) that the laboratory assessment of a patient with a possible eating disorder include a complete blood count and a comprehensive metabolic panel, including electrolytes, liver enzymes, and renal function tests.

APA recommends (1C) that an electrocardiogram be done in patients with a restrictive eating disorder, patients with severe purging behavior, and patients who are taking medications that are known to prolong QTc intervals.

APA recommends (1C) that patients with an eating disorder have a documented, comprehensive, culturally appropriate, and person-centered treatment plan that incorporates medical, psychiatric, psychological, and nutritional expertise, commonly via a coordinated multidisciplinary team.

Anorexia Nervosa

10. APA recommends (1C) that patients with anorexia nervosa who require nutritional rehabilitation and weight restoration have individualized goals set for weekly weight gain and target weight.

11. APA recommends (1B) that adults with anorexia nervosa be treated with an eating disorder-focused psychotherapy, which should include normalizing eating and weight control behaviors, restoring weight, and addressing psychological aspects of the disorder (e.g., fear of weight gain, body image disturbance).

12. APA recommends (1B) that adolescents and emerging adults with anorexia nervosa who have an involved caregiver be treated with eating disorder-focused family based treatment, which should include caregiver education aimed at normalizing eating and weight control behaviors and restoring weight.

Bulimia Nervosa

13. APA recommends (1C) that adults with bulimia nervosa be treated with eating disorder-focused cognitive-behavioral therapy and that a serotonin reuptake inhibitor (e.g., 60 mg fluoxetine daily) also be prescribed, either initially or if there is minimal or no response to psychotherapy alone by 6 weeks of treatment.

14. APA suggests (2C) that adolescents and emerging adults with bulimia nervosa who have an involved caregiver be treated with eating disorder-focused family based treatment.

Binge-Eating Disorder

15. APA recommends (1C) that patients with binge-eating disorder be treated with eating disorder-focused cognitive-behavioral therapy or interpersonal therapy, in either individual or group formats.

16. APA suggests (2C) that adults with binge-eating disorder who prefer medication or have not responded to psychotherapy alone be treated with either an antidepressant medication or lisdexamfetamine.

a The authors of the guideline determined each final rating, as described in the section “Guideline Development Process” (see Table 1 in the full guideline ). A recommendation (denoted by the numeral 1 after the guideline statement) indicates confidence that the benefits of the intervention clearly outweigh harms. A suggestion (denoted by the numeral 2 after the guideline statement) indicates greater uncertainty. Although the benefits of the statement are still viewed as outweighing the harms, the balance of benefits and harms is more difficult to judge, or either the benefits or the harms may be less clear. With a suggestion, patient values and preferences may be more variable, and this can influence the clinical decision that is ultimately made. Each guideline statement also has an associated rating for the strength of supporting research evidence. Three ratings are used: high, moderate, and low (denoted by the letters A, B, and C, respectively) and reflect the level of confidence that the evidence for a guideline statement reflects a true effect based on consistency of findings across studies, directness of the effect on a specific health outcome, precision of the estimate of effect, and risk of bias in available studies ( Agency for Healthcare Research and Quality 2014 ; Balshem et al. 2011 ; Guyatt et al. 2006 ).

The lifetime prevalence of eating disorders in the United States is approximately 0.80% for anorexia nervosa (AN), 0.28% for bulimia nervosa (BN), and 0.85% for binge-eating disorder (BED) ( Udo and Grilo 2018 ), although estimates can vary depending on the study location, sample demographic characteristics, case finding, and diagnostic approaches ( Galmiche et al. 2019 ; Santomauro et al. 2021 ; Wu et al. 2020 ). Furthermore, data suggest an increasing incidence of eating disorders and inpatient care for eating disorders, particularly AN, during the COVID-19 pandemic ( Agostino et al. 2021 ; Asch et al. 2021 ; Otto et al. 2021 ; Taquet et al. 2021 ). Importantly, the lifetime burdens and psychosocial impairments associated with an eating disorder can be substantial because these illnesses can persist for decades, and they typically have an onset in adolescence or early adulthood ( Udo and Grilo 2018 ).

In the United States, for the 2018–2019 fiscal year, the total economic costs of eating disorders were estimated to be $64.7 billion, with an additional $326.5 billion attributable to reductions in well-being associated with eating disorders ( Streatfeild et al. 2021 ).

Eating disorders are also associated with increases in all-cause mortality and deaths due to suicide ( Auger et al. 2021 ; Nielsen and Vilmar 2021 ; Tith et al. 2020 ; van Hoeken and Hoek 2020 ). In addition, rates of suicide attempts are increased in individuals who have an eating disorder ( Keski-Rahkonen 2021 ; Smith et al. 2018 ; Udo et al. 2019 ). Morbidity and mortality among individuals with an eating disorder are heightened by the common co-occurrence of health conditions such as diabetes and other psychiatric disorders, particularly depression, anxiety, posttraumatic stress disorder (PTSD), obsessive-compulsive disorder (OCD), ADHD, and substance use disorders ( Ahn et al. 2019 ; Cliffe et al. 2020 ; Gibbings et al. 2021 ; Keski-Rahkonen 2021 ; Udo and Grilo 2019 ).

Accordingly, the overall goal of this guideline is to enhance the assessment and treatment of eating disorders, thereby reducing the mortality, morbidity, and significant psychosocial and health consequences of these important psychiatric conditions.

Overview of the Development Process

Since the publication of Clinical Practice Guidelines We Can Trust ( Institute of Medicine 2011 ), a report of the Institute of Medicine (now known as National Academy of Medicine), there has been an increasing focus on using clearly defined, transparent processes for rating the quality of evidence and the strength of the overall body of evidence in systematic reviews of the scientific literature. This guideline was developed using a process intended to be consistent with the recommendations of the Institute of Medicine ( Institute of Medicine 2011 ) and the Principles for the Development of Specialty Society Clinical Guidelines of the Council of Medical Specialty Societies (2012). Parameters used for the guideline’s systematic review are included with the full text of the guideline. The APA website features a full description of the guideline development process.

Rating the Strength of Research Evidence and Recommendations

Development of guideline statements entails weighing the potential benefits and harms of the statement and then identifying the level of confidence in that determination. (See Appendix G in the supplemental information accompanying the full guideline online for detailed descriptions of the potential benefits and harms for each statement.) This concept of balancing benefits and harms to determine guideline recommendations and strength of recommendations is a hallmark of GRADE (Grading of Recommendations Assessment, Development and Evaluation), which is used by multiple professional organizations around the world to develop practice guideline recommendations ( Guyatt et al. 2013 ). With the GRADE approach, recommendations are rated by assessing the confidence that the benefits of the statement outweigh the harms and burdens of the statement, determining the confidence in estimates of effect as reflected by the quality of evidence, estimating patient values and preferences (including whether they are similar across the patient population), and identifying whether resource expenditures are worth the expected net benefit of following the recommendation ( Andrews et al. 2013 ).

In weighing the balance of benefits and harms for each statement in this guideline, our level of confidence is informed by available evidence (see Appendix C in the supplemental information accompanying the full guideline online), which includes evidence from clinical trials as well as expert opinion and patient values and preferences. Evidence for the benefit of a particular intervention within a specific clinical context is identified through systematic review and is then balanced against the evidence for harms. In this regard, harms are broadly defined and may include serious adverse events, less serious adverse events that affect tolerability, minor adverse events, negative effects of the intervention on quality of life, barriers and inconveniences associated with treatment, direct and indirect costs of the intervention (including opportunity costs), and other negative aspects of the treatment that may influence decision making by the patient, the clinician, or both.

Many topics covered in this guideline have relied on forms of evidence such as consensus opinions of experienced clinicians or indirect findings from observational studies rather than research from randomized trials. It is well recognized that there are guideline topics and clinical circumstances for which high-quality evidence from clinical trials is not possible or is unethical to obtain ( Council of Medical Specialty Societies 2012 ). For example, many questions need to be asked as part of an assessment and inquiring about a particular symptom or element of the history cannot be separated out for study as a discrete intervention. It would also be impossible to separate changes in outcomes due to assessment from changes in outcomes due to ensuing treatment. Research on psychiatric assessments and some psychiatric interventions can also be complicated by multiple confounding factors such as the interaction between the clinician and the patient or the patient’s unique circumstances and experiences. The GRADE working group and guidelines developed by other professional organizations have noted that a strong recommendation or “good practice statement” may be appropriate even in the absence of research evidence when sensible alternatives do not exist ( Andrews et al. 2013 ; Brito et al. 2013 ; Djulbegovic et al. 2009 ; Hazlehurst et al. 2013 ). For each guideline statement, we have described the type and strength of the available evidence as well as the factors, including patient preferences, that were used in determining the balance of benefits and harms.

Guideline Scope

The scope of this document is shaped by the diagnostic criteria for eating disorders and by the available evidence as obtained by a systematic review of the literature through September 2021, particularly focusing on AN, BN, and BED as defined by DSM-III, DSM-III-R, DSM-IV, DSM-IV-TR, DSM-5, or ICD-10. This practice guideline addresses evidence-based pharmacological, psychotherapeutic, and other nonpharmacological treatments for eating disorders in adolescents, emerging adults, and adults. In addition, it includes statements related to assessment and treatment planning, which are an integral part of patient-centered care.

Our systematic review attempted to include literature on avoidant/restrictive food intake disorder (ARFID); however, rigorous clinical trial data were not available due to the relative recency of the introduction of this diagnosis. We have included some discussion of ARFID in the implementation sections of this document, particularly as it relates to assessment and treatment planning. We specifically excluded rumination disorder and pica from our search of the literature due to their typical age of onset in infancy or childhood and the limited evidence on their treatment. We also excluded treatment of obesity from the scope of this guideline because obesity is not categorized as an eating disorder.

Data are also limited on individuals with eating disorders and significant physical health conditions or co-occurring psychiatric conditions, including substance use disorders. Many of the available studies of eating disorders did not analyze data separately for these patient subgroups or excluded individuals with these comorbidities. Nevertheless, in the absence of more robust evidence, the statements in this guideline should generally be applicable to individuals with co-occurring conditions. Additionally, although treatment-related costs are often barriers to receiving treatment and cost-effectiveness considerations are relevant to health care policy, cost-effectiveness considerations are outside the scope of this guideline.

The full text of the practice guideline describes aspects of guideline implementation that are relevant to individual patients' circumstances and preferences. A detailed description of research evidence related to the effects of pharmacological and nonpharmacological treatments in individuals with eating disorders can be found in the appendices accompanying the full guideline at psychiatryonline.org/guidelines .

From the APA Practice Guideline Writing Group (Catherine Crone, M.D., Chair).

Practice Guidelines are assessments of scientific and clinical information that are current as of the date of authorship but are not continually updated and may not reflect the most recent evidence. They are provided as an educational service and should not be considered as a statement of the standard of care or inclusive of all proper treatments or methods of care. They are not intended to substitute for the independent professional judgment of the treating clinician. The ultimate recommendation regarding a particular assessment, clinical procedure, or treatment plan must be made by the clinician in light of the psychiatric evaluation, other clinical data, and the diagnostic and treatment options available. The guidelines are available on an “as is” basis, and APA makes no warranty, expressed or implied, regarding them. APA assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the guidelines.

APA and the Guideline Writing Group especially thank Laura J. Fochtmann, M.D., M.B.I., Blair Uniacke, M.D., Seung-Hee Hong, and Jennifer Medicus for their outstanding work and effort in developing this guideline. APA also wishes to acknowledge the contributions of other APA staff including Michelle Dirst, Andrew Lyzenga, and Kristin Kroeger Ptakowski. APA wishes to give special recognition to Joel Yager, M.D. for his decades of contributions to APA and its practice guidelines, including his work on the Systematic Review Group and serving as Chair of the Eating Disorders Writing Group for three prior versions of this guideline. APA also thanks the APA Committee on Practice Guidelines (Daniel J. Anzia, M.D., Chair), liaisons from the APA Assembly for their input and assistance, and APA Councils and others for providing feedback during the comment period.

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A systematic scoping review of research on COVID-19 impacts on eating disorders: A critical appraisal of the evidence and recommendations for the field

Affiliations.

• 1 School of Psychology, Deakin University, Geelong, Victoria, Australia.
• 2 Center for Social and Early Emotional Development, Deakin University, Burwood, Victoria, Australia.
• 3 APPEAR, Department of Applied Psychology, Northeastern University, Boston, Massachusetts, USA.
• 4 Department of Psychiatric Emergency & Acute Care, Lapeyronie Hospital, CHRU Montpellier, Montpellier, France.
• 5 Department of Psychology, Sapienza University of Rome, Rome, Italy.
• PMID: 34773665
• PMCID: PMC8646470
• DOI: 10.1002/eat.23640

Abstract in English, Spanish

Objective: Research investigating the effects of COVID-19 on eating disorders is growing rapidly. A comprehensive evaluation of this literature is needed to identify key findings and evidence gaps to better inform policy decisions related to the management of eating disorders during and after this crisis. We conducted a systematic scoping review synthesizing and appraising this literature.

Method: Empirical research on COVID-19 impacts on eating disorder severity, prevalence, and demand for treatment was searched. No sample restrictions were applied. Findings (n = 70 studies) were synthesized across six themes: (a) suspected eating disorder cases during COVID-19; (b) perceived pandemic impacts on symptoms; (c) symptom severity pre versus during the pandemic; (d) pandemic-related correlates of symptom severity; (e) impacts on carers/parents; and (f) treatment experiences during COVID-19.

Results: Pandemic impacts on rates of probable eating disorders, symptom deterioration, and general mental health varied substantially. Symptom escalation and mental health worsening during-and due to-the pandemic were commonly reported, and those most susceptible included confirmed eating disorder cases, at-risk populations (young women, athletes, parent/carers), and individuals highly anxious or fearful of COVID-19. Evidence emerged for increased demand for specialist eating disorder services during the pandemic. The forced transition to online treatment was challenging for many, yet telehealth alternatives seemed feasible and effective.

Discussion: Evidence for COVID-19 effects is mostly limited to participant self-report or retrospective recall, cross-sectional and descriptive studies, and samples of convenience. Several novel pathways for future research that aim to better understand, monitor, and support those negatively affected by the pandemic are formulated.

Objetivo: La investigación que se hace sobre los efectos de COVID-19 en los trastornos de la conducta alimentaria está creciendo rápidamente. Se necesita una evaluación exhaustiva de esta literatura para identificar los hallazgos clave y evidenciar las brechas para informar mejor las decisiones de políticas públicas relacionadas con el manejo de los trastornos de la conducta alimentaria durante y después de esta crisis. Se realizó una revisión sistemática del alcance que sintetizó y valoró esta literatura. MÉTODO: Se buscó investigación empírica sobre los impactos de COVID-19 en la gravedad, prevalencia y demanda de tratamiento de los trastornos de la conducta alimentaria. No se aplicaron restricciones a la muestra. Los hallazgos (n = 70 estudios) se sintetizaron en seis temas: (1) casos sospechosos de trastornos de la conducta alimentaria durante COVID-19; (2) impacto percibido en los síntomas; (3) gravedad de los síntomas antes versus durante la pandemia; (4) correlatos relacionados con la pandemia de la gravedad de los síntomas; (5) impactos en los cuidadores/padres; (6) experiencias de tratamiento durante COVID-19.

Resultados: El impacto de la pandemia en las tasas de probables trastornos de la conducta alimentaria, deterioro de los síntomas y salud mental en general variaron sustancialmente. La escala de síntomas y el empeoramiento de la salud mental durante y debido a la pandemia fueron reportados comúnmente, y los más susceptibles incluyeron casos confirmados de trastornos de la conducta alimentaria, poblaciones en riesgo (mujeres jóvenes, atletas, padres / cuidadores) e individuos con altos niveles de ansiedad o con miedo de COVID-19. Surgió alguna evidencia de una mayor demanda de servicios especializados en trastornos de la conducta alimentaria durante la pandemia. La transición forzada al tratamiento en línea fue un desafío para muchos, sin embargo, las alternativas de telesalud parecían factibles y efectivas. Conclusiones. La evidencia de los efectos de COVID-19 se limita principalmente al autoinforme de los participantes o al recuerdo retrospectivo, los estudios transversales y descriptivos, y las muestras de conveniencia. Se formulan varias vías novedosas para futuras investigaciones que tienen como objetivo comprender, monitorear y apoyar mejor a aquellos que fueron afectados negativamente por la pandemia.

Keywords: COVID-19; carers; eating disorders; machine learning; mental health; open science; scoping review; systematic review; telehealth; treatment.

© 2021 Wiley Periodicals LLC.

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Conflict of interest statement

The authors declare that there are no conflict of interests.

Flow‐chart of literature search

• Unheard voices: The impact of the COVID-19 pandemic on disordered eating in people with marginalized identities: Commentary on Devoe et al. (2022), Linardon et al. (2022) and Schneider et al. (2022). Mikhail ME. Mikhail ME. Int J Eat Disord. 2023 Jan;56(1):68-71. doi: 10.1002/eat.23725. Epub 2022 May 5. Int J Eat Disord. 2023. PMID: 35510676 Free PMC article.

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• Course and predictors of eating disorder symptoms, anxiety symptoms, and pandemic-related eating disorder concerns among adults with eating disorders during the first year of the COVID-19 pandemic. Thompson KA, Hedlund EL, Sun Q, Peat CM, Goode RW, Termorshuizen JD, Thornton LM, Borg S, van Furth EF, Birgegård A, Bulik CM, Watson HJ. Thompson KA, et al. Int J Eat Disord. 2023 Jan;56(1):151-168. doi: 10.1002/eat.23870. Epub 2022 Dec 12. Int J Eat Disord. 2023. PMID: 36508290 Free PMC article.
• Changes of symptoms of eating disorders (ED) and their related psychological health issues during the COVID-19 pandemic: a systematic review and meta-analysis. Haghshomar M, Shobeiri P, Brand S, Rossell SL, Akhavan Malayeri A, Rezaei N. Haghshomar M, et al. J Eat Disord. 2022 Apr 13;10(1):51. doi: 10.1186/s40337-022-00550-9. J Eat Disord. 2022. PMID: 35418108 Free PMC article. Review.
• The impact of the COVID-19 pandemic on eating disorders: A systematic review. J Devoe D, Han A, Anderson A, Katzman DK, Patten SB, Soumbasis A, Flanagan J, Paslakis G, Vyver E, Marcoux G, Dimitropoulos G. J Devoe D, et al. Int J Eat Disord. 2023 Jan;56(1):5-25. doi: 10.1002/eat.23704. Epub 2022 Apr 5. Int J Eat Disord. 2023. PMID: 35384016 Free PMC article. Review.
• A mixed-studies systematic review of the experiences of body image, disordered eating, and eating disorders during the COVID-19 pandemic. Schneider J, Pegram G, Gibson B, Talamonti D, Tinoco A, Craddock N, Matheson E, Forshaw M. Schneider J, et al. Int J Eat Disord. 2023 Jan;56(1):26-67. doi: 10.1002/eat.23706. Epub 2022 Mar 23. Int J Eat Disord. 2023. PMID: 35322449 Free PMC article. Review.
• People's lived experience with an eating disorder during the COVID-19 pandemic: A joint virtual issue of research published in leading eating disorder journals. Weissman RS, Hay P. Weissman RS, et al. Int J Eat Disord. 2022 Feb;55(2):155-160. doi: 10.1002/eat.23653. Epub 2022 Jan 31. Int J Eat Disord. 2022. PMID: 35099825 Free PMC article.
• Short- and long-term effects of Covid-19 pandemic on health care system for individuals with eating disorders. Boltri M, Brusa F, Apicella E, Mendolicchio L. Boltri M, et al. Front Psychiatry. 2024 Mar 14;15:1360529. doi: 10.3389/fpsyt.2024.1360529. eCollection 2024. Front Psychiatry. 2024. PMID: 38550538 Free PMC article.
• A systematic review of COVID-19 and the presentation of avoidant/restrictive food intake disorder and avoidant/restrictive food intake disorder-like symptoms. Maunder K, Markey O, Batchelor R, McNicholas F. Maunder K, et al. BJPsych Open. 2024 Mar 4;10(2):e56. doi: 10.1192/bjo.2023.655. BJPsych Open. 2024. PMID: 38433590 Free PMC article. Review.
• COVID-19-Related distress, body image, and eating behaviors: a cross-sectional explanatory model. Rodrigue C, Rodgers RF, Carbonneau N, Bégin C, Dion J. Rodrigue C, et al. BMC Psychol. 2024 Mar 2;12(1):117. doi: 10.1186/s40359-024-01613-z. BMC Psychol. 2024. PMID: 38431696 Free PMC article.
• Using web-based, guided self-help to bridge the waiting time for face-to-face out-patient treatment for bulimic-spectrum disorders: randomised controlled trial. Vollert B, Yim SH, Görlich D, Beintner I, Gordon G, Musiat P, Schmidt U, Jacobi C. Vollert B, et al. BJPsych Open. 2024 Feb 26;10(2):e53. doi: 10.1192/bjo.2023.629. BJPsych Open. 2024. PMID: 38404025 Free PMC article.
• Protocol for a scoping review to identify research reporting on eating disorders in minority ethnic populations in the UK, Canada, Australia and New Zealand. Tuomainen H, McGowan R, Williams-Ridgway A, Guy K, McNeil S. Tuomainen H, et al. BMJ Open. 2024 Feb 13;14(2):e075034. doi: 10.1136/bmjopen-2023-075034. BMJ Open. 2024. PMID: 38355182 Free PMC article.
• Akgül, S. , Akdemir, D. , Nalbant, K. , Derman, O. , Ersöz Alan, B. , Tüzün, Z. , & Kanbur, N. (2021). The effects of the COVID‐19 lockdown on adolescents with an eating disorder and identifying factors predicting disordered eating behaviour. Early Intervention in Psychiatry. 10.1111/eip.13193 - DOI - PMC - PubMed
• Akintunde, T. Y. , Musa, T. H. , Musa, H. H. , Musa, I. H. , Chen, S. , Ibrahim, E. , … Helmy, M. S. E. D. M. (2021). Bibliometric analysis of global scientific literature on effects of COVID‐19 pandemic on mental health. Asian Journal of Psychiatry, 63, 102753. 10.1016/j.ajp.2021.102753 - DOI - PMC - PubMed
• Al‐Adawi, S. , Dorvlo, A. , Burke, D. , Moosa, S. , & Al‐Bahlani, S. (2002). A survey of anorexia nervosa using the Arabic version of the EAT‐26 and “gold standard” interviews among Omani adolescents. Eating and Weight Disorders‐Studies on Anorexia, Bulimia and Obesity, 7, 304–311. - PubMed
• Aldhuwayhi, S. , Shaikh, S. A. , Mallineni, S. K. , Varadharaju, V. K. , Thakare, A. A. , Ahmed Khan, A. R. , … Manva, M. Z. (2021). Occupational stress and stress busters utilized among Saudi dental practitioners during the COVID‐19 pandemic outbreak. Disaster Medicine and Public Health Preparedness. 10.1017/dmp.2021.215 - DOI - PMC - PubMed
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Eating Disorders and Nutritional Therapy Essay (Critical Writing)

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Eating Disorders and Diet Culture

Family and friends impact, nutritional therapist, treatment resistance.

Eating disorders can be formed based on multiple elements that influence one’s psychological well-being. While the condition is closely related to one’s physical appearance, recognizing the deep psychological distress is essential. Moreover, the facilitators of said state can be numerous. On the one hand, the conditions can be determined by one’s upbringing, namely, interaction with family members and friends. For example, parents who emphasize the importance of maintaining excessive control over their children can generate a sense of desire to gain control in regard to food intake and body proportions. Moreover, it is vital to recognize the external environment as a major influencer when it comes to body image and self-perception.

Diet culture of one of the terms that illustrate the societal obsession with losing weight, counting calories, and looking a certain weight. Furthermore, magazines and social media are elements that impressionable children and teenagers cannot avoid in terms of forming beauty ideals and perceiving beauty as a certain weight. The fact that most of the online and TV representation consists of slim models, singers, actresses, and influencers generates the formation of aspirations to look similar to those in the spotlight.

As thinness is considered a symbol of beauty, the desire to fit into societal norms may impact one’s relationship with food and self-perception. As a result, it can be stated that eating disorders are, indeed, multidetermined. The elements that can impact their development include one’s internal environment, such as close friends and family members, as well as the external environment. Unhealthy beauty standards, representation of unattainable body proportions, and the overall emphasis on the importance of thinness as an association with success impact individuals into developing conditions such as anorexia and bulimia.

As mentioned previously, family members and friends may impact or lead to eating disorders in children. For example, parents who overprotect, limit, and significantly restrict kids are more likely to see negative results in their relationship with food. As a result of the overly-protectiveness, individuals tend to seek a sense of individuality when it comes to an aspect of their lives that cannot be influenced, which is their nutritional intake. Similarly, friends who often make weight remarks, compare their friends’ bodies and looks with other people in a negative way, or adhere to diet culture themselves can negatively impact others. Judging one’s appearance can lead to self-perception issues. As COVID-19 was described as significantly negative for people with eating disorders, it can be noted that isolating children from having social interaction is also associated with adverse consequences. Thus, parents who are extremely strict when it comes to meeting friends and peers generate circumstances in which their children can become hyper-focused on food and isolated in their disorder.

Similarly, parents and friends can unintentionally negatively affect one’s relationship with food by praising dieting. For example, a teenager loses a couple of pounds and receives positive feedback about their looks. As a result, the brain interprets dieting as something that can generate love and recognition. Thus, the pattern may take an unhealthy turn and either result in extreme nutritional restrictions, such as in the case of anorexia, or restriction and subsequent relapse through binging, as in the case of bulimia. Once an unhealthy behavior of praised rather than discussed and adequately approached through therapeutic assistance, an individual finds it challenging to understand its negative aspects.

It is important to recognize the vitality of evidence-based interventions through the assistance of nutritional therapists. Such therapists have expertise when it comes to communicating, interacting, and working with patients with eating disorders. Thus, it is inevitable that the areas of concern of such patients can be effectively addressed through therapeutic measures. There are several areas of a patient’s life that a nutritional therapist can pay attention to. For example, the intervention can tackle potential family problems. The family members of patients with EDs may not be fully aware of the state of their loved ones. Thus, the therapist will recognize the needs of the patient before helping the family members who may not be mindful of the severity of the issues. Moreover, the therapist will approach the patient’s self-perception.

On the one hand, the feelings will be validated as well as the thoughts and emotions one expresses. Moreover, the intervention will consist of a recognition of the psychological distress. Namely, patients with eating disorders are likely to approach problems through their eating patterns. However, nutritional therapists can provide other methods of coping with different emotions. Moreover, it is essential to acknowledge the area of nutritional information. Patients with eating disorders often access information concerning nutrition, and certain facts may not coincide with the medical consensus. Thus, a therapist with knowledge of nutrition can debunk myths and inform the patient of potentially false information that the individual perceives as the truth. Last but not least, the nutritional therapist will address the area of expectations and not put the patient under stressful circumstances concerning recovery. Thus, while family and friends may expect a fast and easy recovery, the expert will guide the patient through the potential relapses and recognize the unevenness of success.

Treatment resistance can occur both in anorexia and bulimia patients. A common reason for not reaching out is the fear of being challenged concerning weight ideals. Both bulimia and anorexia correlate with the presence of the desire to reach a certain weight goal. However, the conditions are different in regard to symptoms. While the reason is present in both cases, the illnesses differ concerning patient reasons for help resistance. Patients with anorexia find it challenging to give up control. The condition gives them a sense of pride as controlling nutritional behavior is challenging, which is why giving up a sense of control stops individuals from seeking medical interventions. Patients with bulimia, on the other hand, are less likely to resist treatment as they aim to regain control over their dietary behavior. Moreover, both conditions are associated with the denial of symptoms. However, patients with anorexia may deny symptom severity or logically explain their reasoning for excessively losing weight.

Individuals with bulimia, on the other hand, are ashamed of the behavior that they exercise. Thus, resistance can be generated by the unwillingness to share their condition and the symptoms that they have. Anorexia is associated with escapism from maturity. Thus, people can be reluctant to seek help because they fear becoming independent and accepting their maturity. The condition is less likely to negatively impact one’s desire to receive medical treatment. Individuals with bulimia, on the other hand, perceive their situation as more damaging as they cannot reach their objectives. Namely, the illness generates circumstances in which they cannot reach their ideal weight. Thus, many individuals may seek treatment because they perceive it as a tool to use to gain control over their food intake. However, as the goals are unhealthy, they may be less likely to be interested once the therapist challenges their desire to restrict their food intake.

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Argumentative Essay on Eating Disorders

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Essay Samples on Eating Disorders

College students face various challenges, and one of the most critical ones is eating disorders. As a result, essays on this topic have become quite popular among students. Writing a college essay about eating disorders can be challenging, especially if you have not experienced it before. However, it is a critical topic that requires attention.

An eating disorder essay typically addresses the psychological, emotional, and physical impacts of eating disorders. It also covers factors that can cause an eating disorder, such as anxiety, depression, and low self-esteem. Additionally, the essay provides information about the types of eating disorders such as anorexia nervosa, bulimia nervosa, and binge-eating disorder.

When choosing among eating disorder essay topics, it is crucial to choose the one you are interested in, as it will make the writing process more manageable. You could choose to write about how eating disorders affect mental health or explore the relationship between social media and eating disorders. Furthermore, you can also provide tips on how to prevent or overcome an eating disorder.

To write an effective essay, ensure that you research extensively to gather relevant information about the topic. Also, maintain a clear structure, including an introduction, body paragraphs, and conclusion. Finally, proofread and edit your work to eliminate any errors.

A college essay about eating disorders is an an opportunity to raise awareness about the harmful impacts of eating disorders and provide tips on prevention and management. Use this section to get inspiration and find essay samples on this topic.

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2. Lactose Intolerance: Main Topics About Disorder

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Eating Disorders, Essay Example

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Introduction

Eating disorders affect men and women of all ages, although adolescents tend to be the age group that is more susceptible. This is because, as their bodies are changing, they may feel more pressure by society as well as peer groups to look attractive and fit in (Segal et al). Types of eating disorders include Anorexia, Bulimia and Compulsive Overeating, which can also be related to the first two. The reasons behind Eating Disorder usually stem from a reaction to low self-esteem and a negative means of coping with life and stress (Something Fishy).  Eating disorders are also often associated with an underlying psychological disorder, which may be the reason behind the eating disorder or which may develop from the Eating Disorder itself. Mental health disorders that are often associated with Eating Disorder include Anxiety, Depression, Multiple Personality Disorder, Obsessive Compulsive Disorder, Post Traumatic Stress Disorder, BiPolar, BiPolar II, Borderline Personality Disorder, Panic Disorder and Dissociative Disorder. The longer a person suffers from ED, the more probable that they will be dealing with another mental illness, most likely Anxiety or Depression (Something Fishy). The eventual outcome of Eating Disorder can be deadly. “Some eating disorders are associated with a 10-15% mortality rate and a 20-25% suicide rate. Sometimes, anorexia, bulimia and compulsive eating may be perceived as slow suicide (Carruthers).” In order to prevent the deadly consequences of Eating Disorder and to prevent it from becoming more pervasive in society, it is necessary to recognize the correct treatment method for this disease.  Traditional treatments have focused on providing risk information to raise awareness of the consequences of Eating Disorder (Lobera et al 263). However, since Eating Disorder is a mental illness, a more effective treatment is one that offers psychological evaluation, counseling and treatment. Cognitive Behavioral Therapy is emerging as a more robust and effective method that can be used not only to treat Eating Disorder but the associated mental illnesses that may accompany it.

The Problem

Eating disorder is pervasive in society and can have deadly consequences on those that suffer from it. Many time Eating Disorder goes undetected by family members and friends because those suffering will go to great lengths to hide their problem. However, there are some signs and symptoms that can be clues that a person is suffering from some sort of eating disorder. According to Segal, these signs can include:

• Restricting Food or Dieting: A change in eating habits that includes restricting food or excessive dieting. The person my frequently miss meals or not eat, complaining of an upset stomach or that they are not hungry. A use of diet pills or illegal drugs may also be noticed.
• Bingeing: Sufferers may binge eat in secret, which can be hard to detect since they will usually do it late at night or in a private place. Signs of potential bingeing are empty food packages and wrappers and hidden stashes of high calorie junk food or desserts.
• Purging: Those who suffer from bulimia will force themselves to throw up after meals to rid their body of added calories. A sign that this is occurring is when a person makes a trip to the bathroom right after eating on a regular basis, possible running water or a fan to hide the sound of their vomiting. They may also use perfume, mouthwash or breath mints regularly to disguise the smell. In addition to vomiting, laxatives or diuretics may also be used to flush unwanted calories from the body.
• Distorted body image and altered appearance: People suffering from Eating Disorder often have a very distorted image of their own body. While they may appear thin to others, they may view themselves as fat and attempt to hide their body under loose clothing. They will also have an obsessive preoccupation with their weight, and complain of being fat even when it is obvious to others that this is not the case.

There are several possible side effects from Eating Disorders, both physical and psychological. Physical damage can be temporary or permanent, depending on the severity of the eating disorder and the length of time the person has been suffering from it.  Psychological consequences can be the development of a mental illness, especially depression and anxiety. Some sufferers of Eating Disorder will also develop a coping mechanism such as harming themselves, through cutting, self-mutilation or self-inflicted violence, or SIV (Something Fishy).

Physical consequences of Eating Disorders depend on the type of eating disorder that the person has. Anorexia nervosa can lead to a slow heart rate and low blood pressure, putting the sufferer at risk for heart failure and permanent heart damage. Malnutrition can lead to osteoporosis and dry, brittle bones. Other common complications include kidney damage due to dehydration, overall weakness, hair loss and dry skin. Bulimia nervosa, where the person constantly purges through vomiting, can have similar consequences as Anorexia but with added complications and damage to the esophagus and gastric cavity due to the frequent vomiting. In addition, tooth decay can occur because of damage caused by gastric juices. If the person also uses laxatives to purge, irregular bowel movements and constipation can occur. Peptic ulcers and pancreatitis can also common negative heath effects (National Eating Disorders Association).  If the Eating Disorder goes on for a prolonged time period, death is also a possible affect, which is why it is important to seek treatment for the individual as soon as it is determined that they are suffering from an Eating Disorder.

Once it is recognized that a loved one may be suffering from an Eating Disorder, the next step is coming up with an effective intervention in time to prevent any lasting physical damage or death. The most effective treatment to date is Cognitive-behavioral therapy, an active form of counseling that can be done in either a group or private setting (Curtis). Cognitive-behavioral therapy is used to help correct poor eating habits and prevent relapse as well as change the way the individual thinks about food, eating and their body image (Curtis).

Cognitive-behavioral therapy is considered to be one of the most effective treatments for eating disorders, but of course this depends on both the counselor administrating the therapy and the attitude of the person receiving it.  According to Fairburn (3), while patients with eating disorders “have a reputation for being difficult to treat, the great majority can be helped and many, if not most, can make a full and lasting recovery.” In the study conducted by Lobera et al, it was determined that students that took part in group cognitive-behavioral therapy sessions showed a reduced dissatisfaction with their body and a reduction in their drive to thinness. Self esteem was also improved during the group therapy sessions and eating habits were significantly improved.

“The overall effectiveness of cognitive-behavioral therapy can depend on the duration of the sessions. Cognitive-behavioral therapy is considered effective for the treatment of eating disorders. But because eating disorder behaviors can endure for a long period of time, ongoing psychological treatment is usually required for at least a year and may be needed for several years (Curtis).”

  Alternative solutions

Traditional treatments for Eating Disorders rely on educating potential sufferers, especially school aged children, of the potential damage, both psychological and physical, that can be caused by the various eating disorders .

“ Research conducted to date into the primary prevention of eating disorders (ED) has mainly considered the provision of information regarding risk factors. Consequently, there is a need to develop new methods that go a step further, promoting a change in attitudes and behavior in the  target population (Lobera et al).”

The current research has not shown that passive techniques, such as providing information, reduces the prevalence of eating disorders or improves the condition in existing patients. While education about eating disorders, the signs and symptoms and the potential health affects, is an important part of providing information to both the those that may know someone who is suffering from an eating disorder and those that are suffering from one, it is not an effective treatment by itself. It must be integrated with a deeper level of therapy that helps to improve the self-esteem and psychological issues from which the eating disorder stems.

Hospitalization has also been a treatment for those suffering from an eating disorder, especially when a complication, such as kidney failure or extreme weakness, occurs. However, treating the symptom of the eating disorder will not treat the underlying problem. Hospitalization can effectively treat the symptom only when it is combined with a psychological therapy that treats the underlying psychological problem that is causing the physical health problem.

Effectively treating eating disorders is possible using cognitive-behavioral therapy. However, the sooner a person who is suffering from an eating disorder begins treatment the more effective the treatment is likely to be. The longer a person suffers from an eating disorder, the more problems that may arise because of it, both physically and psychologically. While the deeper underlying issue may differ from patient to patient, it must be addressed in order for an eating disorder treatment to be effective. If not, the eating disorder is likely to continue. By becoming better educated about the underlying mental health issues that are typically the cause of eating disorder, both family members and friends of loved ones suffering from eating disorders and the sufferers themselves can take the steps necessary to overcome Eating Disorder and begin the road to recovery.

Works Cited

“Associated Mental Health Conditions and Addictions.” Something Fishy, 2010. Web. 19 November2010.

Carruthers, Martyn. Who Has Eating Disorders?   Soulwork Solutions, 2010. Web. 19 November 2010.

Curtis, Jeanette. “Cognitive-behavioral Therapy for Eating Disorders.” WebMD (September 16, 2009). Web. 19 November 2010.

Fairburn, Christopher G. Cognitive Behavior Therapy and Eating Disorders. New York: The Guilford Press, 2008. Print.  

“Health Consequences of Eating Disorders” National Eating Disorders Association (2005). Web. 21 November 2010.

Lobera, I.J., Lozano, P.L., Rios, P.B., Candau, J.R., Villar y Lebreros, Gregorio Sanchez, Millan, M.T.M., Gonzalez, M.T.M., Martin, L.A., Villalobos, I.J. and Sanchez, N.V. “Traditional and New Strategies in the Primary Prevention of Eating Disorders: A Comparative Study in Spanish Adolescents.” International Journal of General Medicine 3  (October 5, 2010): 263-272. Dovepress.Web. 19 November 2010.

Segal, Jeanne, Smith, Melinda, Barston, Suzanne. Helping Someone with an Eating Disorder: Advice for Parents, Family Members and Friends , 2010. Web. 19 November 2010.

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Experiences of eating disorders from the perspectives of patients, family members and health care professionals: a meta-review of qualitative evidence syntheses

Sanna aila gustafsson.

1 School of Law, Psychology and Social Work, Örebro University, University Health Care Research Center, 701 82 Örebro, Sweden

Karin Stenström

2 Swedish Agency for Health Technology Assessment and Assessment of Social Services, P.O. Box 6183, 102 33 Stockholm, Sweden

3 Sweden’s Innovation Agency Vinnova, Mäster Samuelsgatan 56, 101 58 Stockholm, Sweden

Hanna Olofsson

Agneta pettersson, karin wilbe ramsay, associated data.

All relevant data and information are provided in figures, tables and additional files. Additional in-depth information on methods etc. can be provided upon request from the authors.

Eating disorders are serious conditions that cause major suffering for patients and their families. Better knowledge about perceptions of eating disorders and their treatment, and which factors that facilitate or hinder recovery, is desired in order to develop the clinical work. We aimed to explore and synthesise experiences of eating disorders from the perspectives of those suffering from an eating disorder, their family members and health care professionals through an overarching meta-review of systematic reviews in the field.

A systematic literature search was conducted in the databases PubMed, PsycInfo, Scopus, and CINAHL. Inclusion criteria were systematic reviews of qualitative research on experiences, perceptions, needs, or desires related to eating disorders from the perspective of patients, family members or health care professionals. Systematic reviews that fulfilled the inclusion criteria were assessed for relevance and methodological limitations by at least two researchers independently. The key findings were analysed and synthesised into themes.

We identified 17 systematic reviews that met our inclusion criteria. Of these, 13 reviews reported on the patients’ perspective, five on the family members’ perspective, and three on the health care professionals’ perspective. The study population in the reviews was predominantly girls and young women with anorexia nervosa, whilst systematic reviews focusing on other eating disorders were scarce. The findings regarding each of the three perspectives resulted in themes that could be synthesised into three overarching themes: 1) being in control or being controlled, 2) balancing physical recovery and psychological needs, and 3) trusting relationships.

Conclusions

There were several similarities between the views of patients, family members and health care professionals, especially regarding the significance of building trustful therapeutic alliances that also included family members. However, the informants sometimes differed in their views, particularly on the use of the biomedical model, which was seen as helpful by health care professionals, while patients and family members felt that it failed to address their psychological distress. Acknowledging these differences is important for the understanding of anorexia nervosa and other eating disorders, and may help clinicians to broaden treatment approaches to meet the expectations of patients and family members.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40337-021-00507-4.

Plain English summary

The current paper brings together existing knowledge on experiences of eating disorders. We were interested in the views of patients, family members and health care professionals. A literature search identified 17 systematic reviews which addressed these questions. The identified research focused mainly on girls and young women with anorexia nervosa, while research on other eating disorders was limited. Overall, this review suggests that it is important to acknowledge that patients, family members and health care professionals may have different experiences and views regarding treatment of eating disorders, and that it is important to consider all these views in the development of the care of eating disorders.

Introduction

Eating disorders (EDs) are serious psychiatric conditions that often have both psychological and physical consequences and significant societal costs [ 1 , 2 ]. An ED can lead to social problems and reduced quality of life for both the victim and his or her family [ 3 ]. The debut is often during adolescence, although in recent years there has been an increase in new-onset EDs in adults [ 4 , 5 ]. The lifetime prevalence of EDs in Western countries has been estimated to 1.89% [ 6 ]. Girls and women are more often affected than men. Previously, it has been estimated that about 90 percent of those affected are women, but new studies estimate that the proportion of men could be around 20 percent [ 7 ].

ED often require multi-disciplinary treatment [ 8 ]. Most patients are treated in outpatient care, but in more serious cases there may be both day care and inpatient medical or psychiatric care. There are also several inpatient units that specialise in treatments for patients with an ED [ 9 ].

The recommended psychological treatment for adult patients is cognitive behavioural therapy (CBT), which has is strongest empirical support for patients with bulimia nervosa (BN) and binge eating disorder (BED), but is also increasingly recommended for patients with anorexia nervosa (AN) [ 8 – 10 ]. Family-based treatment is the treatment method that is primarily recommended for adolescents. The method is mainly adapted for patients with AN or other restrictive conditions but is also considered to have a good effect for adolescents with BN [ 8 , 9 ].

It is estimated that about half of all people with AN are fully recovered after treatment. At ten-year follow-up, about 73 percent are in remission. The short-term effect of treatment is slightly better for other types of EDs, but there is a significant risk of relapse. In ten years' time, there are marginally more people recovering from BN compared with AN [ 11 ].

Health care professionals often describe that patients with an ED are a challenging group of patients and that it can be difficult to establish a good treatment alliance [ 12 ]. Patients, on the other hand, often describe strong feelings of ambivalence and resistance, which of course complicates treatment, and leads to conflicts with family and friends [ 13 , 14 ].

An improved common understanding of EDs from the perspective of those affected, their family members and caregivers can contribute to better care and treatment for those struggling with EDs and help reduce the strain on their relationships.

Against this background, the aim of the present study was to investigate experiences of living with an ED and factors that facilitate or hinder recovery from the perspectives of patients, their family members and health care professionals.

The current meta-review is based on an assessment conducted at The Swedish Agency for Health Technology Assessment and Assessment of Social Services [ 15 ]. The literature overview was undertaken in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement [ 16 ] following an a priori protocol that was registered locally at the agency.

Search strategy

A systematic literature search covering literature published from January 1, 1990 to September 26, 2018, was conducted in the electronic databases PubMed (NLM), PsycInfo (EBSCO), Scopus (Elsevier), and CINAHL (EBSCO). A complementary, multi-database, search was also conducted. The databases Academic Search Elite, ERIC, Psychology and Behavioral Sciences Collection, and SocINDEX, were searched simultaneously through the EBSCO platform. The detailed search strategy is provided in Additional File 1 .

Eligibility criteria

Inclusion and exclusion criteria were specified in advance. We only included systematic reviews of qualitative research that were published in peer reviewed journals in English, Swedish, Norwegian, or Danish within the time period 1990 to 2018. To be included, a systematic review should cover experiences, perceptions, needs or desires related to EDs from at least one of the following perspectives: persons with eating disorders, family members or health care professionals. All types of EDs according to the DSM-5 classification were considered relevant except for pica, rumination disorder and avoidant/restrictive food intake disorder. There were no restrictions regarding the age of the informants. The targeted reviews were required to cover original studies of qualitative research or of mixed methodology. Systematic reviews using both broad and narrow search strategies were accepted. Grey literature, such as theses, book chapters, and conference abstracts, were excluded.

Study selection

The titles and abstracts retrieved from the literature search were examined independently by two of the authors using the web-based screening tool Rayyan[ 17 ]. If at least one author found an abstract potentially relevant, the article was ordered in full text and assessed for eligibility by at least two authors independently. Systematic reviews that fulfilled the eligibility criteria were forwarded to quality assessment.

Assessment of methodological quality, data extraction and analysis

Systematic reviews that fulfilled the eligibility criteria were assessed for quality by at least two authors independently, using a tool developed at the Swedish Agency for Health Technology Assessment and Assessment of Social Services (Additional File 2 ). The tool was developed specifically to assess methodological limitations of qualitative evidence synthesis and consists of 13 questions that were adapted from the ENTREQ recommendations [ 16 ]. The summarised risk of methodological limitations in the systematic reviews was judged as being of minor, moderate or high concern. Any disagreement between assessors was resolved by discussion. Systematic reviews with high concerns of methodological limitations were excluded from the subsequent process.

Relevant data were extracted from eligible systematic reviews with minor to moderate methodological concerns and summarised in tables.

The findings of selected systematic reviews (reviews with a narrow focus were not included in the synthesis) were analysed using the method of thematic analysis described by Braun and Clarke [ 18 ]. For each group of informants (patients, family members and health care professionals), findings were coded through an inductive analysis. Next, the coded findings were structured by subject within each group of informants and synthesised into themes. The themes were reviewed, similarities and disparities between the three groups of informants were analysed and the themes were assembled into main themes. Data extraction and synthesis was carried out by the first author (SAG) who has clinical experience treating EDs as well as expertise in qualitative research. Data extraction and synthesis of themes were carefully read and partly checked against the original data by three other authors who have experience of qualitative (AP) or quantitative research (KS, KWR) and expertise in conducting systematic reviews. The differing backgrounds of the authors presumably reduced the risk of introducing bias in the analysis and presentation of data. Throughout the synthesis, the authors discussed the findings with each other and reflected over how their background and position may have affected the analysis and whether there were other ways to interpret the results.

The literature search identified 3,082 citations, after removal of duplicates (Fig.  1 ). From the screening of title and abstracts, 79 reviews were retrieved and assessed for eligibility in full text, and 25 of these fulfilled our inclusion criteria. Eight reviews were considered to have high concerns of methodological limitations and were excluded from the subsequent process. The remaining 17 reviews were included and described (Table ​ (Table1). 1 ). Of these, four reviews had a scope that differed substantially from the other reviews (two reviews focused on pregnant women with AN [ 19 , 20 ], one review focused on gender issues [ 21 ] and one focused on treatment seeking [ 22 ], therefore, they were only included in the descriptive summary but not in the thematic analysis. Thus, the thematic analysis included data from 13 systematic reviews.

PRISMA flow chart

Included systematic reviews

Descriptive summary of the systematic reviews

The 17 systematic reviews with minor or moderate concerns of methodological limitations were published between 2009 and 2018 and were based on a total of 255 unique qualitative primary studies. An assessment of study overlap revealed that few of the primary studies were included in more than one review (see Additional File 3 ). The majority of the included reviews were based on studies using qualitative methods only, but three reviews also included studies that used mixed methods [ 22 – 24 ]. Most of the original studies had used interviews as the primary source of data, but some studies were based on focus group discussions, survey responses, or observations of behaviour.

Most reviews carried out synthesis using meta-ethnography [ 19 , 25 – 33 ]. Other synthesis methods were thematic analysis [ 22 , 23 ], qualitative meta-analysis [ 34 ], and various forms of integrative synthesis methods [ 20 , 21 , 24 , 35 ]. Few of the included reviews stated that they had followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement[ 22 , 34 ] or the Enhancing Transparency in Reporting the synthesis of Qualitative research (ENTREQ) system[ 31 , 32 ]. In most reviews, however, the Critical Appraisal Skills Programme (CASP) had been used to assess the quality of the primary studies [ 19 – 21 , 25 – 29 , 31 – 34 ].

A total of 13 systematic reviews described the patients’ perspectives [ 19 – 23 , 25 , 27 , 28 , 30 – 34 ], five concerned the family members’ perspectives [ 24 , 26 , 29 , 31 , 32 ], and three focused on the health care professionals’ perspectives [ 31 , 32 , 35 ]. Most reviews included both men and women with EDs, and only three reviews focused exclusively on women [ 19 , 20 , 33 ]. Most reviews did not specify age under the inclusion criteria, but no review included studies on young children. Five reviews focused on adolescents with EDs but they also included young adults [ 23 , 24 , 30 – 32 ]. Nine reviews focused exclusively on AN [ 23 , 25 , 27 , 28 , 30 – 33 , 35 ], while the remaining reviews included all EDs, or did not specify diagnosis in the inclusion criteria. One of the reviews that covered health care professionals’ perspectives included interviews exclusively with nurses [ 35 ] whereas the other two comprised nurses, therapists, and treatments teams [ 31 , 32 ]. The informants in the reviews that included family members were predominantly parents, but siblings and partners were also included in some of the reviews [ 24 , 26 , 29 , 31 , 32 ].

Thematic analysis of the systematic reviews

In each of the three perspectives we identified three themes that described experiences of the disease, the care provided and the recovery process. When the three perspectives were analysed together, we identified three overarching themes that were shared among all three perspectives (see Table ​ Table2). 2 ). The themes are described in the table below and organized by perspective. Illustrative quotes for each theme are provided in Table ​ Table3 3 .

Overview of subthemes and overarching themes from the 13 systematic reviews that were included in the thematic analysis

Themes and quotations from the systematic reviews

The perspective of individuals with ED

Nine systematic reviews describing the patients’ perspectives were included in the thematic analysis [ 23 , 25 , 27 , 28 , 30 – 34 ]. This perspective comprised three themes; a lonely struggle for control (covered by three studies [ 28 , 31 , 33 ]), a wish to be seen as a whole person (covered by four studies [ 23 , 27 , 30 , 32 ]), and finding the keys to recovery (covered by five studies [ 23 , 25 , 27 , 33 , 34 ]).

A lonely struggle for control

Life with an ED was described as a lonely and isolated existence, with health problems and difficulties in relationships [ 28 , 31 , 33 ]. Low self-esteem, a negative body image and perfectionist demands on themselves were seen as underlying factors that led to a difficult adolescence, and uncertainty about who they were.

For those with AN, the disorder was seen as an integral part of their personality and the person they were, which also made them afraid to get well since they feared that it could mean losing their identity [ 28 , 31 , 33 ].

Living with AN was described as a struggle to be in control while simultaneously feeling controlled by the disease. The positive experience of control contributed to feeling special and having power (for example over their treatment) and the ED was described as a "coping strategy" that helped them deal with difficult emotions and events. For the majority of patients, the other side of the coin was a difficult experience of losing, or giving up control, for example when entering treatment, or feeling trapped in their illness and symptoms. The subjects described how their whole life revolved around a compulsive focus on calorie counting and compensatory behaviours and how this resulted in a lonely and isolated existence [ 28 , 31 , 33 ].

A wish to be seen as a whole person

When seeking treatment, patients had often felt ill-treated and misunderstood, especially in general care [ 23 , 27 , 30 , 32 ], and therefore, they stressed the necessity of access to specialised ED care. The patients often felt that the health care focused too much on physical recovery and on normalization of eating and weight. This was perceived as unempathetic and gave patients the impression that the therapists did not understand the patient's real problems. Although patients could see that normalization of weight and eating was an important and necessary part of treatment, they felt that focusing too heavily on physical recovery led to feel that they were being reduced to their disease [ 23 , 27 , 30 , 32 ].

Instead, they emphasised that there must be room for conversation about thoughts and feelings and that the care they received should take their wider life situation into account. It was also felt necessary that the therapistwas able to adapt and change his/her approach during the course of the treatment. Initially, the patients might need a therapist that was proactive and took control. At a later stage when the patient was able to take responsibility, treatment should empower and encourage the patient to take control of his/her own life.

Family-based treatment was common for young patients. These patients often felt considerable guilt towards parents and siblings, and they described that a positive aspect of family treatment was that it could help the whole family to feel better, bring them together, and improve their communication. However, patients also described feeling unable to talk about everything that was important to them in family treatment. This risked the treatment becoming superficial and focused on concrete behavioural changes instead of dealing with the underlying causes of the condition. The young patients therefore felt that it was important that family treatment was combined with individual therapy. Individual therapy was seen as an important forum for motivating, engaging and giving patients hope. Patients perceived that it was important to address issues such as relationships both within and outside the family, and to be seen as a unique individual, rather than simply as a person with AN [ 23 , 27 , 30 , 32 ].

Finding the keys to recovery

In the studies that focused on AN, patients consistently described recovery as something “greater” than the mere absence of an ED diagnosis. An experience of being healthy did not arise automatically once weight and eating were normalized. Patients described recovery as a process of getting to know themselves and daring to admit that the false sense of control that the ED had given them had actually come to control them. Recovery meant being able to stick to healthy behaviors even when it felt difficult [ 23 , 25 , 27 , 33 ].

Four factors were described as central to recovery; to regain control and power over one's own life, changing the anorexic identity and finding and accepting oneself behind the disease; getting in touch with one's true feelings and acknowledging the consequences of the disease for oneself, thereby challenging the anorexic thoughts.

In the systematic review that described recovery more generally for people with an ED, it was found that patients perceived the term "healthy" as including feeling well emotionally, socially and psychologically. It included having strategies for dealing with difficulties that arise in life and feeling a sense of belonging or feeling that life is meaningful.

Recovery was described as a process that took place in stages and sometimes with setbacks. Recovery was facilitated by supportive relationships, such as with family and friends. Trusting relationships with family and friends could have a double impact, both by motivating the ill person to seek treatment [ 25 ] and by providing support during the recovery process. Trusting relationships with health care professionals were also considered important both for the motivations to seek and stay in treatment [ 25 ] and for the recovery process itself [ 34 ].

The health care perspective

Three systematic reviews included the experiences of health care staff [ 31 , 32 , 35 ], and all three focused mainly on AN. Two of them [ 31 , 32 ] examined similarities and differences in perceptions of AN and its treatment among staff, patients and relatives. The third overview [ 35 ] explored the knowledge, attitudes and perceived challenges of health care professionals.

The health care perspective also revealed three themes: a tug of war over control, the necessity of physical recovery, and being let into someone’s world.

A tug of war over control

The health care staff saw control as a central aspect of AN and they felt that besides the need to control their own body, patients also felt a need to control their family through the ED [ 32 ]. The staff perceived that the need for control became a force outside the patient's active choice and that the ED ended up controlling the patient instead. The staff therefore felt that they had to "take over" control from the young person through clear structure and rules regarding treatment [ 32 , 35 ]. This was considered to create security for the young person, and to give them the opportunity to allow themselves to let go of control. However, in one study, nurses also stressed the importance of knowledge and understanding of the disease, and described how a lack of knowledge could lead to staff using control strategies in a repressive and punishing way that could create resentment [ 35 ].

The necessity of physical recovery

The health care staff used a biomedical model to understand AN [ 31 , 32 ]. AN was seen as a disease to be treated. This meant that staff emphasised weight rehabilitation and changes in other observable ED symptoms as important parts of treatment. The staff expressed that they were lacking knowledge about ED symptoms and diagnosis, and that they had insufficient skills for dealing with patients' problems [ 35 ]. This led them to feel frustrated and insecure in meeting the patients. Increased knowledge was seen as essentialfor improving staff attitudes towards people with EDs.

The medical view of the ED was perceived as helpful by staff because it was considered to reduce the patient's and their relatives' feelings of guilt. Health care professionals found it helpful to see the disease as a phenomenon separate from the individual. The staff used this "externalisation" to distinguish between disease and patient as a treatment strategy [ 31 , 32 ]. It was considered to reduce the patient's feelings of guilt and increase the patient's motivation.

Even under this theme, a review by Salzman et al. [ 35 ] also emphasised the other side of the coin, meaning.e., that although weight rehabilitation was important, a single-minded focus on physical issues could hamper the relationship with the patient.

Being let in to someone’s world

A good alliance between patient and therapist was considered essential [ 31 , 32 , 35 ]. Honesty, understanding, respect and a non-judgmental and empathetic attitude were important for building an alliance. The staff expressed that patients with EDs were a difficult and demanding patient group with whom it was challenging to form an alliance and who often expressed suspicion and distrust of their caregivers. Staff became frustrated with patients' ambivalence or reluctance to engage in treatment and sometimes perceived patients as manipulative.

One of the systematic reviews examined the health care professionals' experiences of meeting relatives, in this case parents of people with an ED [ 32 ]. The staff emphasised the importance of building a positive alliance with the parents and engaging them in the treatment. This was considered a necessary condition for effective treatment of young patients with AN.

The perspective of family members

Five systematic reviews covered the perspective of family members [ 24 , 26 , 29 , 31 , 32 ]. All of them focused mainly or exclusively on AN. Like the other two perspectives, the perspective of family members also revealed three themes; the balancing act between control and trust, a call for a more holistic approach to treatment, and a wish for a working alliance with the whole family.

The balancing act between control and trust

The family members felt that the whole family was negatively affected by the afflicted person’s illness [ 24 , 26 , 29 , 31 , 32 ]. The family members described the ED as an active choice which the sufferer, at least at some point during the course of the disease, could have refrained from [ 29 ]. The family members felt that controlling eating and weight had, for the ill person, become a way of coping in a life where other things felt uncontrollable, but that the ED had instead taken control of their loved one and changed her personality and behaviour [ 26 , 29 , 31 ]. Family patterns and old roles changed [ 24 , 26 , 29 , 31 , 32 ] and the family members described communication as characterised by conflict, mistrust and uncertainty. It could be perceived that the person with the ED had regressed, which led parents to become more controlling. The opposite sometimes happened with siblings, who would take on a more mature role, becoming a "mediator" in the family and taking greater responsibility.

Family members described a difficult balancing act between adapting to the ill person by, for example changing the family's eating habits and activities, andbeing more demanding. The family members tried to find a balance between controlling and making demands on the ill person, and at the same time reinforcing and encouraging positive steps and showing trust in her/him. To some extent, they felt that it was important to adapt the family's social activities and meals by, for instance, not having certain foods in the house. However, this sometimes resulted in them "walking on eggshells" and accepting behaviours that were counterproductive in the long term. Siblings were often critical of the parents' strategies and thought that they adapted too much.

A common strategy to cope with this balancing act was to distinguish the disease from the individual and to see certain behaviours as “the disease that speaking”. This helped the family members to maintain a supportive attitude, even when they felt that the person with the ED was misbehaving [ 24 , 26 , 29 , 31 , 32 ].

A call for a more holistic approach to treatment

It was stressful to see the person with an ED suffering, and the family members felt anxiety, frustration and guilt. Their everyday lives were affected, both socially and professionally. Many informants reported that the family became more isolated and that they stopped associating with others. Several of the systematic reviews reported that family membersno longer had time for hobbies and that working life was affected [ 24 , 29 ]. Against this background, family members stressed the importance of easier and faster access to specialised care with experienced and committed staff who could give the whole family including siblings information and support, and put them in touch with support networks outside the family to connect with others who were in the same situation. [ 24 , 26 , 29 , 31 , 32 ].

Parents often felt that the health care model was too biomedical and focused too much on physical symptoms such as starvation. They perceived that the unique person behind each patient was not seen [ 24 , 29 , 32 ]. Although the biomedical explanatory model could help to relieve parents' feelings of guilt, it also conveyed a negative image of the patient's chances of recovery [ 29 ]. The family members emphasised that it was important that the therapist saw the patient as an individual and that the therapy did not focus too narrowly on correcting the ED symptoms, but also incorporated other things that were important to the patient [ 24 , 29 , 32 ].

A wish for a working alliance with the whole family

The parents often blamed themselves for their child’s ED [ 24 , 26 , 29 , 31 , 32 ] and they thought a lot about it’s possible origins in the family and the child’s upbringing. The siblings felt severely affected by the situation, something that was also described by their parents [ 24 , 26 , 29 , 32 ]. Siblings became anxious and often took great responsibility for both the afflicted sibling and their parents. At the same time, they often felt angry with their unwell sibling, and sometimes jealous that they were receiving more time and attention from their parents. The healthy siblings sometimes felt a conflict of loyalty and also were compelled to mediate between the afflicted sibling and the parents [ 29 ].

Family members often experienced a lack of support from the health service, especially at the beginning of the illness [ 24 , 26 , 29 , 31 , 32 ]. It was difficult to get a correct diagnosis and adequate help, and family members had to fight to get the right care for the affected person. Family members often felt excluded from care and experienced that health care staff did not support them or listen to them. This exclusion was often attributed to rules or principles that had to do with confidentiality or legislation. Family members also felt that they received conflicting advice and suggestions from the health service or that they were not taken seriously [ 29 ].

The three overarching themes

Our synthesis identified three themes in common among the views of patients, family members and health care professionals (Table ​ (Table2). 2 ). The first theme pertained to the patients’ need for control, which was seen by the family members and the health care professionals as a false control, where the affected person was in fact controlled and limited by the ED. The second theme was the balancing of physical recovery and psychological needs, where the biomedical model was viewed differently from each of the three perspectives. Health care professionals felt that, if used with the right knowledge and competence, the model gave them the support they needed to define target symptoms and goals for recovery, while patients and family members felt that the model placed too much focus on the somatic aspects of the disorder and failed to address psychological distress. The third theme was the importance of forming trusting relationships for accomplishing a well-functioning therapeutic alliance that recognises the whole individual and not just the disease, and that also involves family members.

This meta-review brings together a substantial amount of qualitative research, including data from 255 unique studies, on the experiences of EDs from the perspectives of patients, family members and health care professionals. Three themes emerged from the synthesis; the patients’ need for control, balancing physical recovery and psychological needs, and the importance of trusting relationships in the treatment of the disorders. Although all three main themes were identified in the views of all three groups of informants, there were some differences in their expression that may be important to acknowledge.

Implications for health care systems

The ED causes a great deal of suffering for both the affected person and the family members, and both parties emphasise the importance of getting the right treatment. From our synthesis, however, there appears to be a divergence between ED patients and their family members on the one hand, and the health care staff on the other, regarding how the ED should be understood and treated. Health care professionals often represent a biomedical explanatory model, while ED patients and their family members feel that this model is not sufficient. These different approaches are not necessarily conflicting, but can potentially complicate the alliance building and pull the treatment in different directions, where the professionals place more emphasis on symptom reduction and weight rehabilitation, while the patients and their family members want a more holistic approach to treatment and recovery. This conflict, and suggestions for how to avoid it, was also emphasised in one of the studies involving health care staff [ 35 ]. The main suggestion from patients, family members and health care staff on how to achieve this holistic approach, while still attending to the physical needs of the patient, was to increase the knowledge. The importance of having access to staff who are knowledgeable in terms of both understanding the disease and attending to the patient’s physical needs, and understanding their psychological struggles, and are able to meet the patient in a respectful way, cannot be overemphasised.

In today's health care, and among policy makers, there is an increasing focus on using manual-based treatments and on measuring the outcomes of treatment. Great emphasis is placed on questions about which treatment method has the best scientific support, and how to make sure that therapists actually deliver the method according to the manual [ 36 ]. These are of course important questions that need to be addressed. However, it is important to acknowledge that these aspects seem to be entirely absent from patients’ and families’ descriptions of what is lacking or what is important in treatment. On the contrary, persons with an ED's desire treatment that is more flexible and individualised, with greater focus on their unique, individual situation. None of the systematic reviews in this study mentioned that patients or family had called for any specific method of treatment, instead they called for a more holistic and individually-adapted care. Since a significant proportion of ED patients discontinue treatment prematurely [ 37 ], and a common reason for this is lack of motivation [ 38 ], it is important that health care providers increase their knowledgeabout how patients and family members perceive the care provided, and what would motivate patients to stay in treatment.

Treatment manuals are a set of principles designed to be applicable to each individual patient. When delivered flexibly and skilfully there is no reason why individualised care should be in conflict with the use of treatment manuals [ 39 ]. However, many clinicians regard treatment manuals as constraining their practice and limiting the individualisation of interventions [ 39 ]. Against this background, and the findings of this study in terms of patients and relatives calling for a more holistic and individualised treatment, it seems that ED treatment faces a great challenge in integrating theory, research, clinical knowledge and the important perspectives of patients and their families in order to improve and adapt ED treatment. For this to be successful, it has been suggested that we need to expand the scope of treatment research and stimulate diversity within ED treatment and research [ 40 ].

Limitations and strengths

One limitation of this meta-review, which is a common problem in qualitative research syntheses, is the considerable variability in research aims, data collection approaches and methods of synthesis that were present in reviews as well as in the primary studies. Another problem that is difficult to avoid in qualitative syntheses is the possibility that the authors’ underlying assumptions may have introduced bias through selection of the experiences and views that are presented in the studies. The risk of overestimating the findings through data redundancy should also be considered, but is probably not a major problem in this meta-review since most of the included reviews had a unique focus and the study overlap was limited (Additional File 3 ).

In our quality assessment, we found that most systematic reviews that fulfilled our inclusion criteria were of high or moderate methodological quality. However, relatively few of the included reviews stated that they had followed the PRISMA or ENTREQ statement, and the compliance with these guidelines can indeed be enhanced – for example, by reporting how many reviewers were involved in the screening of studies and whether they worked independently (PRISMA checklist item 8)[ 41 ]. Other shortcomings in the included reviews were inadequate reporting of when in the progression of the disorder the data was collected, and inadequate information on the study authors’ competence in the field. In most reviews, however, a tool for critical appraisal of the original studies had been used, such as the CASP tool.

The major strengths of this meta-review are its broad scope – including three different perspectives of key informants – and the rigorous methodology of the literature screening, which involves systematic assessment of methodological limitations in the included reviews. The tool that we used for assessment of qualitative systematic reviews was developed in parallel to this meta-review and incorporates elements from the PRISMA guidelines [ 41 ] and the ENTREQ recommendations [ 16 ]. We believe that this tool can also be useful for other authors of qualitative meta-reviews. Another strength of the current study is the adequacy of the data. Most of the findings in our meta-review were based on at least three different systematic reviews and seven to 32 primary studies.

The study population and research needs

The included reviews focused mainly on anorexia nervosa (AN) or on EDs in general, without specifying a particular diagnosis. None of the identified reviews exclusively evaluated individuals with bulimia nervosa (BN) or binge eating disorder (BED), which was somewhat surprising. The possibility to generalise our findings to other EDs than AN is thus limited. To our knowledge, no systematic review that specifically focuses on experiences of BN or BED have been published after our literature search was performed. Considering the high prevalence of BN and BED that have been reported [ 6 ], there is a need to highlight experiences of these disorders in future qualitative systematic reviews.

Most of the included systematic reviews concerned both women and men with EDs, but men were underrepresented relative to their expected incidence, which possibly reflects the proportions of women and men that are studied in the primary qualitative studies of EDs. This is confirmed by a recent systematic review on men’s experiences of ED treatment[ 42 ], which identified only nine primary studies (not included in this review since it was published after our literature search). Since the prevalence of EDs is known to be higher among women, there might be a tendency to overlook the problem in men and boys. However, the prevalence of EDs among men has increased substantially over the last two decades and it is estimated that men and boys constitute 20% of all individuals with EDs [ 7 ]. Thus, there is an increasing need to acknowledge their experiences, which may not necessarily be interchangeable with those of girls and women.

Since our literature search was performed, a few additional systematic reviews have been published on EDs from the patients’, family members’ and/or health care professionals’ views. These mainly confirm our findings [ 43 – 45 ]. However, there are some interesting new results that build on preexisting knowledge and are worth mentioning. For example one systematic review focused exclusively on the experiences of males with an ED, and besides confirming the findings of this study regarding the call for an individual and person centered approach in treatment, it also added interesting results about recognition, help-seeking and treatment from a male perspective [ 42 ].

A systematic review by Johns et al. gave new insights about the perceptions of health care professionals, patients and their family members in terms of meeting professional staff with knowledge about EDs [ 12 ]. Another systematic review by Graham et al. described the dilemma faced by health care professionals using the key concept of “coping with caring without curing”, elegantly illustrating the dissonance between careers’ aspiration to help and the reality of their working situation [ 46 ].

To our knowledge, this is the first meta-review of qualitative systematic reviews focusing on experiences of EDs. The compilation acknowledges some important similarities and differences between the views of the three different informants, where health care professionals felt that the biomedical model was helpful, while patients and family members felt that it was insufficient and failed to address their psychological distress. Viewing these perspectives as complementary rather than conflicting may contribute to a better understanding of the complexity of treating EDs. Acknowledging experiences from various perspectives may eventually lead to adaptations in health care that can hopefully improve treatment compliance and recovery rates for individuals with EDs.

Our meta-review also indicates that there is a need for methodologically well conducted qualitative systematic reviews on EDs in which the population is clearly described regarding age, sex, and diagnosis. In particular, there is a need for systematic reviews on experiences regarding BN and BED.

Acknowledgements

Not applicable.

Abbreviations

Authors' contributions

SAG: Study design, screening of full-text articles, data extraction, major contribution in thematic analysis and interpretation of data, major contribution in writing the manuscript. KS: Study design, screening of abstracts and full-text articles, data extraction control, assessment of methodological limitations, analysis and interpretation of data. HO: Design and execution of literature search. AP: Assessment of methodological limitations, analysis and interpretation of data. KWR: Study design, screening of abstracts and full-text articles, data extraction control, analysis and interpretation of data, major contribution in writing the manuscript. All authors have read and approved the final manuscript.

The project was funded by The Swedish Agency for Health Technology Assessment and Assessment of Social Services.

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The authors have no competing interests.

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