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Published in final edited form as: Appl Physiol Nutr Metab. 2024 Jul 5;49(10):1419–1425. doi: 10.1139/apnm-2024-0088

Overcoming Barriers in Eating Disorder Care: Advances, Gaps, and Recommendations for Equitable Assessment and Treatment

Em JE Mittertreiner 1, Jennifer Couturier 2, Melissa Simone 3, Charlynn Small 4, Glenda Courtney-Martin 5,6, Lesley Moisey 7, Shirin Panahi 8,9, Emilie Lacroix 1
PMCID: PMC11912811  NIHMSID: NIHMS2063887  PMID: 38968627

Abstract

This paper provides an overview of topics discussed by clinicians and researchers invited to speak at the Canadian Nutrition Society’s Thematic Conference 2023, which was centered on advances in research and practice in the assessment and treatment of disordered eating and eating disorders. Presenters emphasized the importance of understanding how systemic factors such as racism, weight stigma, and COVID-19 affect the assessment and treatment of eating disorders, and proposed strategies for addressing these inequities. In this paper, we provide actionable recommendations for clinicians working with individuals with eating disorders; professional development, cultural competence, and equitable assessment and treatment practices are discussed.

Keywords: Nutrition, eating disorders, disordered eating, racism, weight stigma, health inequities, COVID-19

Introduction

In January 2023, the Canadian Nutrition Society held a thematic conference to build capacity among nutrition and dietetics professionals to identify and treat disordered eating. Speakers included people with lived experience of eating disorders (EDs), as well as researchers in clinical psychology, dietetics, psychiatry, and diversity science (incl. the second, third, fourth, and last authors of the current article). They presented emerging topics in the field of EDs, including differentiating ED diagnoses from other disordered eating behaviours, counteracting systematic disparities in the assessment and treatment of EDs, understanding the impact of COVID-19 on individuals with EDs, and implementing current best practices. This article provides a summary of the research evidence shared by conference speakers as well as recommendations for clinicians to help them identify and work effectively with people with EDs.

What are Disordered Eating and Eating Disorders?

Disordered eating is a broad term that describes a variety of unhealthy relationships with food, the body, and exercise. Representing distinct patterns of clinically significant disordered eating and body image disturbances, EDs such as binge eating disorder (BED), bulimia nervosa (BN), anorexia nervosa (AN), and avoidant/restrictive food intake disorder (ARFID) are described in the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5; American Psychiatric Association 2013). The diagnoses of otherwise specified feeding or eating disorder (OSFED) and unspecified feeding or eating disorder (UFED) are given when patterns of disordered eating are associated with clinically significant distress or impairment, but do not align completely with another DSM-5 ED diagnosis. Between 5.5–17.9% of women and 0.6–2.4% of men will experience a DSM-5 ED by young adulthood (Silén and Keski-Rahkonen 2022). EDs have some of the highest mortality rates among psychiatric disorders, second only to opioid and amphetamine use disorders (Chesney et al. 2014), and they are associated with a wide range of adverse outcomes including depression, anxiety, and suicidal ideation as well as medical complications such as osteoporosis, dental erosion, and malnutrition-related neurocognitive impairment (Westmoreland et al. 2016). Subthreshold disordered eating, exhibited in up to 54% of women and 41% of men (Simone et al. 2022), can include sub-clinical presentations of DSM-defined EDs (e.g., binge eating less frequently than what is required for a BED diagnosis), as well as other dysfunctional relationships to eating, body image, or exercise that do not align with DSM-5 criteria (e.g., orthorexia, an obsession over the “healthiness” of one’s diet; and muscle dysmorphia, a fixation on muscularity). Subthreshold disordered eating is also detrimental to health. For example, in population-based longitudinal research, disordered eating behaviours have been found to predict poorer self-rated health and greater psychological distress (Kärkkäinen et al. 2018), as well as depression (Cortés-García et al. 2023).

The Impact of Cultural Stereotypes and Biases on Assessment and Treatment

Unfortunately, only 19–36% of individuals with EDs receive treatment (Hart et al. 2011). The delay between developing an ED and receiving treatment for it ranges from an average of 2.5 years for AN to almost 6 years for BED (Austin et al. 2021). Assessment practices may fail to identify EDs among men, individuals who identify as Two-Spirit, lesbian, gay, bisexual, transgender, queer, intersex, or other marginalized sexual and gender identities (2SLGBTQI+)1, racialized minorities, neurodivergent people, older adults, those with low socioeconomic status (SES), and those living in larger bodies. Disparities in diagnosis and access to care can reflect many issues, including the poor fit of diagnostic categories with diverse populations and presentations of illness, differential help-seeking patterns across diverse groups, and clinician error or bias (Reyes-Rodríguez and Franko 2020). For example, individuals with minoritized racial or ethnic identities are less frequently asked by doctors and mental health professionals about their eating behaviors compared to individuals with privileged racial or ethnic identities (Becker et al. 2003). Consequently, at equivalent symptom levels, White people are more likely than racialized minorities to receive an ED diagnosis or treatment (Becker et al. 2003; Sonneville and Lipson 2018; Moreno et al. 2023). Compounding these disparities in diagnosis and access to care, existing treatment protocols may lack effectiveness or evidence thereof with individuals who hold diverse identities. Differences in effectiveness can be due to an approach’s content, delivery, or both, and their lack of fit with the values, attitudes, practices, and cultural norms of the target population (Sonneville and Lipson 2018; Reyes-Rodríguez and Franko 2020).

Unfortunately, many care providers lack awareness of the impact of racial discrimination on health outcomes, and in particular, the ways that racism, colourism, and trauma can affect the development and presentation of EDs in Black people (Small and Fuller 2020). Clinicians should equip themselves with knowledge about how race and identity affect the manifestation of EDs. It is important, however, to provide this information with sufficient nuance and humility– training clinicians to become “competent” in various cultures can backfire, leading to further stereotyping and racist attitudes (Lekas et al. 2020). For instance, there is a common narrative in current literature that construes Blackness as a “protective factor” against EDs due to the appreciation of curvier bodies in Black communities (Awad et al. 2015; Lowy et al. 2021; Parker et al. 2022; Alexander et al. 2024). This narrative is often espoused while failing to consider the impact of measurement: because the most commonly used ED measures were developed and normed in samples of predominantly White women, they may underestimate the prevalence of EDs in Black communities. The resultant “protective” effects (i.e., lower prevalence of EDs among Black women, compared to White women) may be driven by measurement error and the lack of fit of ED screening measures, rather than by true prevalence differences (Lowy et al. 2021). Further, this narrative implies a universal “curvy” or “slim-thick” standard, disregarding evidence that Black women are not immune to White-centric beauty standards (Capodilupo and Kim 2014; Alexander et al. 2024) and oversimplifying body image in Black communities, where ideals may be shaped equally by opposing Black and White-centric norms, as well as by more specific cultural contexts and intersecting identities. Adding insult to injury, some research suggests that Black beauty standards have been co-opted by White women, resulting in features typically associated with Black women, such as full lips and curves, no longer being considered attractive on Black women (Kelch-Oliver and Ancis 2011; Parker et al. 2022). To dismantle health disparities rooted in racism and colourism, clinicians must strive not only to build nuanced understandings of how body image and EDs may manifest in the specific communities of the people they work with, but also to approach this learning with an attitude of cultural humility– an orientation to care based on self-reflexivity, openness to sharing power in therapeutic relationships, and an appreciation of patients’ expertise (Lekas et al. 2020).

Weight bias represents an additional barrier to care. In contrast to media portrayals, most people with EDs are not underweight by BMI standards (Duncan et al. 2017). On average, individuals with atypical AN (e.g., all but the BMI criterion of AN are met; American Psychiatric Association 2013) wait 9.2 years longer to receive services than those with underweight AN (Harrop 2000). Doctors often overlook the need for ED treatment in people living in larger bodies, instead recommending weight loss interventions (Chen and Gonzales 2022). Receiving feedback of this nature from a health professional only exacerbates an individual’s preoccupation with weight and reinforce disordered eating behaviours. Weight bias and racism can intersect, compounding assessment and treatment barriers. For example, physicians treating Black women in larger bodies often attribute health concerns to the patient’s weight (Ward et al. 2009). Again, this often leads providers to recommend diet and exercise to remedy any health problems, which can worsen an ED and delay necessary healthcare interventions.

COVID-19 and Eating Disorders

COVID-19 and its associated public health policies have influenced ED prevalence and risk factors over the past few years. While lockdown periods and business closures were necessary to reduce transmission rates, they uprooted lives and created financial insecurity, resulting in known ED risk factors such as stress, uncertainty, and social isolation (Touyz et al. 2020). These restrictions also limited mobility (e.g., public transit closures) and physical activity (e.g., fitness center closures), both of which can increase ED risk (Branley-Bell and Talbot 2020). Additional risk factors such as weight stigma emerged and were perpetuated by public discourse around “the corona 15” (Simone et al. 2021). Research has yielded conflicting evidence about the impact of the pandemic on disordered eating and EDs. Whereas several studies found increased disordered eating, decreased body satisfaction, magnified weight/shape concerns, and diminished motivation to recover (Branley-Bell and Talbot 2020; Simone et al. 2021), others reported no pandemic-related changes in ED prevalence or symptoms (Machado et al. 2020). A meta-synthesis examining this literature revealed diverse personal, psychological, social, and environmental factors that may explain these disparate findings– explanatory factors include increased discriminatory attitudes towards minoritized individuals, food insecurity due to job loss or other COVID-related financial stress, and reduced access to supportive services due to quarantine restrictions (Schneider et al. 2023).

Best Practices in ED Treatment

In 2020, a group of clinicians, researchers, and individuals and caregivers with lived experience with an ED formed the Canadian Consensus Panel to investigate ED treatment best practices for youth (Couturier et al. 2020). The authors completed a systematic review to synthesize best treatments, used the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system (Guyatt et al. 2011) to grade evidence, and followed a voting process to build consensus-based recommendations. Family-based treatment (FBT) and least intensive treatment (i.e., brief hospital stays for individuals with short courses of illness) were identified as the most effective, evidence-based treatments. Due to a lack of evidence, cognitive behavioral therapy (CBT), multi-family therapy, adjunctive yoga, and adjunctive antipsychotic medication (e.g., Olanzapine, Aripiprazole) were only weakly recommended. For adults, American Psychiatric Association practice guidelines (2023) recommend ED-focused CBT or interpersonal therapy for BED, ED-focused CBT paired with a serotonin reuptake inhibitor (i.e., antidepressant medication) for BN, and ED-focused psychotherapy for AN. Importantly, the COVID-19 pandemic has introduced a wide range of changes that may be deleterious to ED recovery. It is important that clinicians adapt intervention efforts to accommodate these unique pandemic-related challenges– to this end, Cooper et al. (2022) provided an overview of risks and recommendations.

Cultural and environmental factors affect the accessibility of best practices. For example, FBT requires supervision of one’s child during and after meals, therefore caregivers who work full-time may find this treatment modality to be logistically challenging. To adapt the standard FBT model for diverse families, clinicians have needed to adjust many aspects of this treatment (Dimitropoulos et al. 2024). For example, one clinician explained that in Maori culture, it would be considered incredibly rude not to eat with a family if present during the family meal– to adapt FBT in this case, the clinician gave Maori families a choice to decide if the clinician should join in the meal (Dimitropoulos et al. 2024). Although not specific to FBT, McEntee et al. (2023) raised concerns that existing manualized ED treatments do not explicitly acknowledge structural factors such as racism or anti-fat bias. In addition to specific intervention components needing to be adapted, Western conceptualizations of mental illness may sometimes be at odds with the more general belief systems of many global majority cultures, and thus, caregivers from such cultures may be reluctant to engage with FBT or Western medicine.

Equity is also a concern for virtual treatment modalities. On one hand, virtual care advantages individuals who cannot travel to brick-and-mortar facilities, and research suggests that virtual ED treatment is no less efficacious than face-to-face treatment (Raykos et al. 2021). However, in a study by Lewis et al. (2021), 68% of ED patients who transitioned to online care during the pandemic indicated that they would not choose to continue virtual care, and those who reported low therapeutic alliance felt especially strongly that virtual therapy had resulted in lower quality care. Further, the devices required by virtual appointments are expensive and require technical knowledge. Couturier et al. (2021) recommended hybrid models of care (e.g., weekly virtual counseling supplemented by occasional in-person monitoring of vitals) in the COVID-19 context.

Toward Equitable Care in Eating Disorders

Widespread societal changes are necessary to address the impact of gender stereotypes, classism, racism, fatphobia, and COVID-19 on ED assessment and treatment. Bearing in mind the complexity of these intersecting challenges and the often-slow pace of progress, we make recommendations for clinicians who work with individuals with EDs to address these disparities through evidence-based, culturally competent practice.

  1. Clinical supervision: Education and clinical training in EDs are rarely included in advanced undergraduate or graduate training programs for healthcare professionals (e.g., Setnick et al. 2022). Accordingly, high-quality supervision is crucial to building competence in ED assessment and treatment. We echo practice and training standards developed by the Australia & New Zealand Academy for Eating Disorders (ANZAED) for dietitians (Heruc et al. 2020) and mental health professionals (Hurst et al. 2020), which recommend that providers who wish to practice in the area of EDs undertake clinical supervision. The supervisor can be a clinician of the same or a different professional discipline, but they should be experienced in the area of EDs.

  2. Professional training: Providers should strive to gain knowledge regarding ED assessment and treatment best practices through self-education, workshops, and online training. General educational opportunities can be accessed through provincial programs such as the Ontario Community Outreach Program for Eating Disorders, while other institutions offer training in specific modalities such as Enhanced CBT (e.g., The Centre for Research on Eating Disorders at Oxford) and FBT (e.g., The Training Institute for Child and Adolescent Eating Disorders). It may also be helpful to build a personal list of external resources and other clinicians to whom clients can be referred for evidence-based intervention as needed.

  3. Cultural humility: Providers can deepen their knowledge of the needs of culturally and socially marginalized individuals by attending community-based activities such as festivals, town halls, and marches, as well as professional development activities such as equity and inclusion workshops, which may also offer continuing education credits when accessed via non-profit organizations and academic institutions. Providers should also build skills and relationships according to their geographical location; for example, those working on Indigenous territories might familiarize themselves with the customs, traditions, and common clinical concerns of their host nation’s members. Further, it may be helpful to establish professional connections with local service providers who belong to diverse communities to allow for culturally appropriate referrals and consultations. Providers should be explicitly trained to adopt an orientation of cultural humility, i.e., an orientation to care based on self-reflexivity, appreciation of patients’ expertise, openness to sharing power, and holding one’s knowledge lightly.

  4. Adaptation and supplementation of interventions: We recommend the use of culture-specific adaptations to common evidence-based interventions such as CBT and dialectical behaviour therapy, wherever possible. Although limited empirical research exists on cultural adaptations of evidence-based ED interventions, guidelines and recommendations are available, which provide insight into the application of cultural adaptation frameworks for specific culturally diverse populations (Reyes-Rodríguez and Franko 2020; Small and Fuller 2020). Where best practices do not meet the needs of marginalized individuals, evidence-based approaches should be supplemented with resources that are responsive to individuals’ specific needs based on their backgrounds and life circumstances. For example, providers working with individuals identifying as 2SLGBTQI+ can refer to Wicked Bodies (Joy et al. 2023), a toolkit that engages individuals who identify as queer in discourse around body ideals and social pressures. Featuring first-person narratives, Wicked Bodies presents the lived experiences of 2SLGBTQI+ individuals navigating socio-cultural pressures, gender expectations, and peer-based body ideals.

  5. Rigorous screening and assessment: Areas of unawareness and biases that prevent the identification of EDs can be mitigated by using structured transdiagnostic screening instruments that have been psychometrically validated for use with diverse populations. Several brief instruments exist for this purpose (Levinson et al. 2024) including the Screening for Disordered Eating instrument (SDE; Maguen et al. 2018) and the Eating Disorder Screen for Primary Care (EDS-PC; Cotton et al. 2003). Though the SCOFF (Sick, Control, One Stone, Fat, Food; John F Morgan et al. 1999) remains the screening tool most frequently used in primary care settings, there is little evidence regarding its use with adolescents, racialized minorities, men, and gender-diverse individuals, and it has been shown to lack sensitivity in detecting EDs other than AN and BN, such as BED and OSFED (Levinson et al. 2024). The choice of screening measures should be based on the strength of their psychometric evidence when used for comparable purposes in similar populations. Critically, screening measures should be implemented universally (i.e., to every client entering one’s practice regardless of age, gender, race, and body size), rather than selectively based on clinical judgment, to reduce opportunities for biases and ensure that people of all backgrounds and life circumstances can be accurately screened for EDs.

  6. Flexible treatment delivery: Implementing more rigorous assessment procedures is likely to increase the number of individuals seeking treatment for EDs, which will necessitate efforts to enhance the capacity and accessibility of such services. To minimize barriers and maximize the number of clients able to access treatment, both in-person and telehealth services should be offered as per client needs and preferences.

Conclusions

In sum, cultural, social, and environmental factors influence how EDs are assessed, diagnosed, and treated. Stereotypes and longstanding myths in both the dietetics field and wider medical community hinder accurate diagnosis and affect the treatments made available to historically marginalized groups. Learning to address these issues with cultural humility cannot be accomplished through a one-time thematic conference, but rather through a combination of rigorous clinical supervision, ongoing self-reflexive practice (e.g., interrogating and challenging our own positions in relation to power, knowledge, and other people), and systemic change (e.g., lobbying policy makers to address healthcare injustices). By deconstructing oppressive beliefs and biases on personal and systemic levels, we can move towards a healthcare system that provides equitable, culturally responsive care for all people with EDs.

Acknowledgments

The opinions in this article are based on content presented at a Thematic Conference organized by the Canadian Nutrition Society on January 29th, 2023, in Toronto, Canada, titled “Advances in Research and Practice: From Identification to Treatment of Disordered Eating Behaviors.”

Funding

E.L. holds grant funding from the Dalhousie Psychiatry Research Fund and a Harrison McCain Young Scholars Award. E.J.E.M. is supported by a Canada Graduate Scholarship (Masters) from the Social Sciences and Humanities Research Council (SSHRC), as well as by the Maritime SPOR Support Unit (MSSU) Trainee Support Program. M.S. is supported by US National Institute of Minority Health and Health Disparities under Award K99 MD015770. This content is solely the responsibility of the authors and does not represent the official views of the US National Institutes of Health. E.L. and J.C. received travel support from the Canadian Nutrition Society to attend the conference, which served as the basis for this manuscript. The production of the Canadian Practice Guidelines for the Treatment of Eating Disorders in Children and Adolescents as well as the Virtual Care Addendum were supported by the Canadian Institutes of Health Research (CIHR). All other authors report no relevant funding.

Footnotes

The authors declare there are no competing interests.

1

We use the acronym “2SLGBTQI+,” the term used by the Government of Canada. By listing “2S” first, this term acknowledges that Two Spirit Indigenous people were the first gender minority people in North America, and demonstrates solidarity with them in this period of truth and reconciliation in Canada (Women and Gender Equality Canada 2022).

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