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The legacy of hope summit: a consensus-based initiative and report on eating disorders in the U.S. and recommendations for the path forward

Abstract

Background

Several unsuccessful attempts have been made to reach a cross-disciplinary consensus on issues fundamental to the field of eating disorders in the United States (U.S.). In January 2020, 25 prominent clinicians, academicians, researchers, persons with lived experience, and thought leaders in the U.S. eating disorders community gathered at the Legacy of Hope Summit to try again. This paper articulates the points on which they reached a consensus. It also: (1) outlines strategies for implementing those recommendations; (2) identifies likely obstacles to their implementation; and (3) charts a course for successfully navigating and overcoming those challenges.

Methods

Iterative and consensual processes were employed throughout the Summit and the development of this manuscript.

Results

The conclusion of the Summit culminated in several consensus points, including: (1) Eating disorder outcomes and prevention efforts can be improved by implementing creative health education initiatives that focus on societal perceptions, early detection, and timely, effective intervention; (2) Such initiatives should be geared toward parents/guardians, families, other caretakers, and frontline healthcare providers in order to maximize impact; (3) Those afflicted with eating disorders, their loved ones, and the eating disorders community as a whole would benefit from greater accessibility to affordable, quality care, as well as greater transparency and accountability on the part of in-hospital, residential, and outpatient health care providers with respect to their qualifications, methodologies, and standardized outcomes; (4) Those with lived experience with eating disorders, their loved ones, health care providers, and the eating disorders community as a whole, also would benefit from the establishment and maintenance of treatment program accreditation, professional credentialing, and treatment type and levels of care guidelines; and (5) The establishment and implementation of effective, empirically/evidence-based standards of care requires research across a diverse range of populations, adequate private and government funding, and the free exchange of ideas and information among all who share a commitment to understanding, treating, and, ultimately, markedly diminishing the negative impact of eating disorders.

Conclusions

Widespread uptake and implementation of these recommendations has the potential to unify and advance the eating disorders field and ultimately improve the lives of those affected.

Plain English summary

A cross-disciplinary group of eating disorder professionals, thought leaders, and persons with lived experience have come together and reached a consensus on issues that are fundamental to the battle against the life-threatening and life-altering illnesses that are eating spectrum disorders. Those issues include: (1) the need for early detection, intervention, prevention, and evidenced-based standards of care; (2) the critical need to make specialized care more accessible and affordable to all those in need; (3) the importance of developing uniform, evidenced-based standards of care; (4) the need for funding and conducting eating spectrum disorder research; and (5) the indispensability of advocacy, education, and legislation where these illnesses are concerned. During the consensus process, the authors also arrived at strategies for implementing their recommendations, identified likely obstacles to their implementation, and charted a course for successfully navigating and overcoming those challenges. Above all else, the authors demonstrated that consensus in the field of eating spectrum disorders is possible and achievable and, in doing so, lit a torch of hope that is certain to light the path forward for years to come.

Background

In the summer of 2019, the father of a young woman,Footnote 1 who spent nearly a decade locked in a life-and-death struggle with an eating disorder, saw the need for and the benefits that likely would flow from a consensus-based approach to issues fundamental to the eating disorder battle—a goal that has eluded the U.S. eating disorder community for more than four decades. It was then that the idea of a summit involving a diverse group of some of the most widely-respected eating disorder researchers, academicians, clinicians, thought leaders, advocates, and persons with lived experience in the U.S. was conceived. Invitations were sent and, in January 2020, more than two dozen invitees convened—each at their own expense—for the Legacy of Hope Summit.

The goals of the Summit were ambitious: (1) to articulate and reach a consensus regarding a series of recommendations on issues relating to: (a) prevention, early detection, and early intervention; (b) accessibility, affordability, and accountability; (c) standards of care; (d) research and research funding; and (e) advocacy, education, and legislation; that all believed would have a significant beneficial impact on those afflicted with eating disorders, their loved ones, and the eating disorders community as a whole; (2) to develop short and long term strategies for implementing those recommendations; (3) to identify likely obstacles to their implementation; and (4) to chart a course for successfully navigating and overcoming those challenges.

All acknowledge that there is much work still to be done and that there is room to disagree over a word here or a phrase or sentence there. Moreover, the authors realize that not everyone in the field will agree with everything in this paper. However, given the gravity of the situation and the preciousness of the lives hanging in the balance, the consensus is that: (1) the status quo is unacceptable; (2) the need for a thoughtful and unified plan of action is immediate; and (3) the time for meaningful progress is long overdue. Thus, the authors’ and the supporting endorsers’ hope is that this paper will be a living document that will serve as a catalyst for further consensus-building and an initial blueprint for hope and healing for years to come.

Methods

Participants in the Summit were chosen by the initiative’s organizer with the aim of achieving a balanced cross-section of the various stakeholders in the eating disorder community (e.g., clinicians providing treatment at all levels of care (i.e., from outpatient to inpatient and residential), researchers, thought leaders, advocates, academicians, and persons with lived experience). It is noteworthy that the invitees and eventual attendees included a number of current or former founders, board members, and/or executive directors of major eating disorders organizations, including AED, iaedp, NCEED, NEDA, and Project Heal. Invitations also were informed by the organizer’s nearly decade long involvement in and familiarity with a wide variety of experts in the eating disorders community, as well as recommendations from several widely-respected leaders in the field. Moreover, to help foster dialogue, the desired total number of participants was set at approximately 25, so that each of the five work groups would be populated with five members.

The Summit participants, in turn, were assigned to five work groups—one for each of the Consensus Points outlined in this paper according to their stated preferences and their areas of expertise. However, in order to build a true consensus and derive the full benefit of the attendees’ considerable and broad-based experience, each participant also was afforded an opportunity to provide input on any or all of the other work groups in advance of the Summit, and many did so.

Each work group was then provided with a packet of materials that included: (a) a proposed Consensus Point; (b) a working draft of the “status quo” relating to their assigned subject area; and (c) an outline of the five areas referenced in the Background section (above). They, in turn, were challenged to engage in open and vigorous debate on each of those documents and subject matters until they arrived at a consensus within the work group.

At the conclusion of the Summit, a timetable was established and agreed upon for moving the initiative forward and each work group was asked to designate a leader, whose roles included finalizing their group’s report and serving as the point person for future communications with the group. In the ensuing three months, each of the work groups completed, vetted, approved, and submitted their individual reports. Those reports were then woven into a single document before being circulated to all Summit attendees for their review, comment, and approval.

Over the next six months, the resulting document went through a series of revisions within the individual work groups, before being circulated a second time to the Summit participants for their final review and approval. Once a unanimous consensus was reached, each of the Summit participants was encouraged to send the draft Report to colleagues and other principal stakeholders in the eating disorders field, as well as those with lived experience, for their review and support. The resulting Report, which forms the basis for this paper, is the culmination of those efforts and represents the collective wisdom and consensus recommendations of all Summit participants and endorsers.

Results

The results of the Summit are organized by work group as below:

  • Section I Prevention, Early Detection, and Intervention

  • Section II Accessibility, Affordability, and Accountability

  • Section III Standards of Care

  • Section IV Research and Research Funding

  • Section V Advocacy, Education, and Legislation

Each section contains an overview of the status quo for each topic area, a Consensus Point, and a list of goals and strategies. The results here are intended to serve as a practical roadmap for improving and advancing the eating disorders field as a whole.

Section I: prevention, early detection, and intervention

The Status Quo Various presentations of eating disorders occur in people from all walks of life across the lifespan, yet they remain under-detected and under-treated [1]. Despite the fact that there is increasing evidence that school-based eating disorder screening at primary, middle, and secondary school levels is as effective as other health-based screenings in reducing the dollars spent and years lost in later treating and battling those disorders (not to mention the impact they have on quality of life), such screenings and referrals for early intervention are not routinely done in U.S. schools at any level. In fact, there has never been an organized national screening program in place in school or primary healthcare settings for pre-adolescents. Further, in 2013, the Centers for Disease Control (CDC) removed several questions from the National Youth Risk Behavior Survey (YRBS) that had provided surveillance for those engaging in disordered eating behaviors.

Preschool through secondary school comprehensive health education (including a focus on health literacy, adopting healthy behaviors, and valuing wellbeing) with a parent component provides the opportunity for increasing knowledge and skills to act in healthy ways and builds personal value for healthy behaviors at home and in schools. Although preschool through secondary school comprehensive health education is mandated in most states, there are no formal assessments, as there are with other subjects like math and language arts. As a result, health education is fit into curriculums as an afterthought and not a priority. In addition, there is not uniform preschool through secondary school health education teacher training to enable teachers to confidentially address sensitive health topics and how to build a healthy norm within the classroom. In addition, prevention efforts in adults are almost non-existent with the exception of programs that focus on college students. The lack of education to healthcare providers exacerbates this problem among children, adolescents, and adults.

The same conundrum exists in the areas of early detection and treatment intervention. More specifically, there is an evolving body of medical and scientific literature indicating that both can have a meaningful impact on eating disorder sufferers’ symptom severity, quality of life, and mortality rate, and yet, disturbingly, few individuals with eating disorders across the diagnostic spectrum receive treatment [2]. Even more troubling, symptoms that could lead to early detection and intervention are often missed in atypical presentations, males, communities of color, and people with body types and weights that are not commonly perceived to be associated with eating disorders. Additionally, there exists an under recognition of the complex psychiatric (e.g., mood disorders, non-suicidal self-injury, and suicide risk) and medical comorbidities (e.g., cardiac, metabolic, endocrine, etc.) associated with eating disorders.

Although universal prevention is ideal, there is some debate as to whether it is achievable. Evidence from targeted prevention efforts, however, is convincing many that universal prevention is possible [3]. To date, however, little has been done to implement and disseminate prevention initiatives and there is a considerable amount of work still to be done in estimating the willingness and the cost associated with their implementation.

Consensus Point: Eating disorder outcomes and prevention efforts can be improved by implementing creative health education initiatives that focus on societal perceptions, early detection, and timely, effective intervention. Such initiatives should be geared toward parents/guardians, families, other caretakers, and frontline healthcare providers in order to maximize impact (Table 1).

Table 1 Goals and strategies for prevention, early identification, and intervention

Section II: accessibility, affordability, and accountability

The Status Quo Eating disorders are treatable illnesses, and full recovery is possible given access to quality care for the requisite period of time. However, too few patients have access to timely evaluation and/or the appropriate level and duration of care required to achieve and sustain full recovery [4]. A number of factors contribute to this state of affairs, including: (1) the prohibitive cost of treatment at every level of care; (2) health insurers’ refusal to reimburse or adequately reimburse for the required care; (3) the disparity between what is covered by private and government funded insurance; (4) biases related to a narrow perception of the type of person who is most likely to struggle with an eating disorder; and (5) the relative scarcity of eating disorder providers and support resources, especially in underserved populations and areas [5].

Lack of access to expert evaluation and treatment for eating disorders is especially prevalent in populations that do not conform to existing stereotypes [6]. Thus, it is vital that we develop models of education, early identification, and support that effectively engage and support all at-risk populations.

Lastly, accountability by providers at all levels of care is essential. Relapse rates appear exceedingly high but are difficult to quantify because those in a position to do so (e.g., residential treatment providers) rarely report short and long-term outcomes for the treatments they provide and there is no empirically-derived, consensus-driven definition of recovery with which to evaluate outcomes.

To address the foregoing gaps in access to expert care (e.g., the shortage of providers with specialized training [7] and their geographic dispersion, the enormous financial and public and private insurance barriers, and the variability in the information, treatment recommendations, and care offered by specialized and non-specialized providers, etc.), as well as to demonstrate treatment effectiveness, the eating disorders field must strive to ensure that all impacted populations are: (1) properly screened and identified utilizing consistent and standardized protocols; (2) educated on evaluating treatment options grounded in evidence-based practices; and (3) afforded access to appropriate levels and quality of care. We believe these are the essential components to obtain full recovery—and that they are achievable.

Consensus Point Those afflicted with eating disorders, their loved ones, and the eating disorders community as a whole would benefit from greater accessibility to affordable quality care, as well as greater transparency and accountability on the part of in-hospital, residential, and outpatient healthcare providers with respect to their qualifications, methodologies, and standardized outcomes (Table 2).

Table 2 Goals and strategies for accessibility, affordability, and accountability

Section III: standards of care

The Status Quo There are four categories of stakeholders in the field of eating disorders in the U.S.: advocacy organizations (Alliance, the National Association of Anorexia Nervosa and Associated Disorders [ANAD], the Eating Disorders Coalition for Research, Policy, and Action [EDC], the Eating Disorders Leadership Summit [EDLS], Families Empowered and Supporting Treatment for Eating Disorders [F.E.A.S.T.], the National Eating Disorders Association [NEDA], and Project HEAL), professional organizations (the Academy for Eating Disorders [AED] and the International Association of Eating Disorder Professionals [iaedp]), trade groups (the Residential Eating Disorder Consortium [REDC]), and educational and training groups (the National Center of Excellence for Eating Disorders [NCEED]). Each of these stakeholders has a significant interest in the standards used in regulating the diagnosis and treatment of eating disorders in the U.S. Those areas include: (1) national regulatory standards for the accreditation of eating disorders treatment facilities; (2) national accreditation of professionals specializing in the treatment of eating disorders; and (3) standards and guidelines for determining the type and level of care eating disorders patients receive.

  • National Regulatory Standards for Eating Disorders Treatment Program Accreditation: The two prominent regulatory organizations in the U.S. are the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the Commission on Accreditation of Rehabilitation Facilities (CARF). As a result of a multi-organizational task force comprised of representatives from AED, iaedp, and NEDA and led by AED, both JCAHO and CARF have adopted eating disorders specific criteria for inpatient, residential and partial hospital programs to be accredited as disease specific programs. These criteria are in need of continuous revision. Presently, however, there is not a dedicated resource within the field to monitor the criteria. One of the continuing gaps in criteria for being a specialized eating disorders program is how to assess the level of specialized competencies within all of the disciplines used in the treatment of eating disorders (e.g., medical, psychiatric, psychotherapy, nursing, nutritional, and others).

  • National Credentialing of Eating Disorders Professionals: The regulatory and insurance payors are progressively looking to the professional community for some credentialing mechanism that demonstrates that an individual has specialized training in the diagnosis and treatment of eating disorders. Currently, iaedp is the only professional organization in the U.S. that has created and offers an eating disorders specific certification process for various disciplines. Unfortunately, the iaedp credentialing process has not been consistently endorsed by other U.S. professional organizations.

  • National Standards and Guidelines for Determining the Types and Levels of Care for Eating Disorders: There are multiple organizations, consortiums and industry groups that have issued guidelines relating to the treatment of eating disorders. Overall there is moderate to high consensus that several evidence-based treatments exist for outpatient treatment of AN, BN, and BED [8,9,10]. Unfortunately, there is less consensus regarding the best treatment strategies for eating disorders patients who do not remit with outpatient treatment. Historically, the American Psychiatric Association (APA) guidelines have been the gold standard for determining levels of care (outpatient, intensive outpatient, partial hospital, residential, inpatient) in the U.S. Unfortunately, these guidelines were suspended over the last several years and are currently undergoing revision. Although the APA guidelines were generally regarded as the gold standard, they have never been formally endorsed by all of the eating disorders organizations in the U.S.

Consensus Point Those afflicted with eating disorders, their loved ones, healthcare providers, and the eating disorders community as a whole would benefit from the establishment and maintenance of treatment program accreditation, professional credentialing, and treatment type and levels of care guidelines (Table 3).

Table 3 Goals and strategies for standards of care

Section IV: research and research funding

The Status Quo Research funding for eating disorders is not commensurate with the severity of these illnesses. The federal funding allotted to eating disorders research in 2015 borders on the absurd—approximately $0.73 per affected individual [11]. By contrast, the federal government supported autism research at a per affected individual rate of $58.65, schizophrenia research at a rate of $86.97, and Alzheimer’s Disease research at a rate of $88 [12]. These figures are not offered to diminish in any way the severity of the latter diseases, but merely to highlight a gross disparity that has prevailed in the U.S. for decades where eating disorders are concerned. The figure associated with eating disorders research funding has decreased over time, given that, in 2011, it was $0.93 per affected individual [13]. Suffice it to say, there is only so much research progress one can expect with such limited resources.

Developing a career in eating disorders research is extremely challenging given the disparity between clinically relevant problems and research funding availability and priorities. As a result, the eating disorders field is hemorrhaging young eating disorder scholars. Moreover, researchers are striving to answer questions that have the greatest chance of being funded versus answering questions that are most important to the field. In other words, instead of science, clinical experience, and patients’ needs driving science aimed at creating clinical impact, money is driving the science because researchers are scrambling to keep their jobs. Further, under conditions of scarce resources, it becomes harder for science to self-correct because (a) people find contrary findings threatening and (b) it is extremely hard to switch research programs if one’s original research hypotheses were proven incorrect. In other words, because switching programs of research is exceedingly difficult, researchers are incentivized to design studies aimed at supporting their model or treatment as opposed to identifying when a treatment or model fails, even though we need failures to move science forward. Scarce resources also limit data sharing, open science, replication, and reproducibility.

There are bottlenecks that hamper the development of new eating disorder researchers. On the positive side, there are an increasing number of eating disorder experts available to train new eating disorder researchers in clinical psychology doctoral programs. On the negative side, we cannot expect this trend to be maintained because obtaining a faculty position at a major research university in clinical psychology has become increasingly difficult. Thus, many newly trained psychology scholars are taking positions with higher undergraduate teaching loads, which reduces research productivity. In addition, fewer academic medical centers offer training to physicians (including psychiatrists), medical students, and allied health professionals and students in eating disorders care and research.

Moreover, the changes in academic medical centers have impacted opportunities for clinical psychologist training at the internship level, driving promising young scholars away from the field [7, 14]. One key driver of the changes occurring in academic medical centers is that eating disorder care is neither as profitable as other forms of medical care (e.g., bariatric surgery), nor as likely to result in research money given the limited National Institutes of Health (NIH) expenditures in this area. In addition, patients with insurance are increasingly seeking care at for-profit treatment centers, reducing the availability of patients to serve both as research participants and to help educate the next generation of clinicians about eating disorders. From the research side, obtaining the sample sizes needed for definitive research is difficult. From the clinician side, there is a shortage of physicians, psychologists, and therapists adequately experienced and trained in the assessment and treatment of eating disorders.

With regard to nutrition research, there is an extreme shortage of quality research. Most research focuses on “concerns about obesity,” and almost none of this research investigates negative outcomes with regard to eating pathology. The bariatric surgery literature similarly fails to adequately address eating pathology.

Consensus Points The workgroup identified several Consensus Points as below:

  • The establishment and implementation of effective, empirically/evidence-based standards of care requires research across a broad spectrum of domains (e.g., epidemiology, genetics, neurobiology, nutrition, medicine, behavior, psychology, sociology, neuroscience), a diverse range of populations, adequate private and government funding, and the free exchange of ideas and information among all who share a commitment to understanding, treating, and, ultimately, markedly diminishing the negative impact of eating disorders.

  • The “eating disorder stereotype” has limited the field’s definition of eating disorders and eating disorders research. It also limits the perceived public health impact of eating disorders, impacts perceptions of who gets diagnosed with an eating disorder, and contributes to the perception that “disordered eating” and eating disorders are fundamentally different (versus representing different points on a spectrum of eating behavior ranging from normal/healthy to extremely pathological). This has led to barriers and delays in providing care related to eating behaviors and cognitions. One first step in improving the eating disorders field with respect to research and funding is to reclassify eating disorders as eating spectrum disorders (ESD) to encompass the full spectrum of eating pathology.

  • The eating disorders research field has historically been criticized for being insular. The field would benefit from greater participation in wider mental health research at all levels (conferences, leadership in generalist mental health organizations, publication in generalist journals, participation in generalist editorial boards and NIH study sections; regular dialogue with the US-based Centers for Disease Control and Prevention).

  • Although NIH institutes that target “medical” conditions are increasingly funding research studying behavioral interventions, the National Institute of Mental Health (NIMH) has moved in the opposite direction and is largely the institute of neuroscience. Support for foundational research that has led to major treatment successes (dialectical behavioral therapy, family-based therapy, cognitive-behavioral therapy for a range of disorders) is significantly more difficult to obtain from NIMH, given the increased focus on biological aspects of mental health. We need an institute (or other funding mechanism) that funds behavioral science in the area of mental health. This would also facilitate the study of combined behavioral and biological interventions. Such an endeavor should be taken on by more than just the eating disorders field (e.g., partner with the Coalition for the Advancement and Application of Psychological Science). Importantly, the lack of funding is driving promising and sorely needed junior researchers out of the field into clinical jobs.

  • Seven key limitations in the research environment must be addressed

    • Researchers and clinicians need greater respectful collaboration in identifying and addressing clinically relevant questions. This could potentially be self-funded by treatment centers, bypassing the NIMH problem.

    • We have insufficient, understandable research addressing problems in the dissemination and implementation of our existing effective treatments. Although NIMH has a funding mechanism for dissemination and implementation research, this mechanism is designed to advance dissemination and implementation science, which is aimed at big-picture, cross-cutting dissemination and implementation questions. This poses two problems for the eating disorders field. First, dissemination and implementation science is extremely jargon heavy and aimed at the large-scale questions, meaning that many of its findings are hard (if not impossible) to translate into easy to understand, practical solutions for specific problems. Second, the funding mechanism is not intended to answer any questions that are very specific to one type of setting, disorder, and/or treatment. For this reason, this research for eating disorders will need to be funded outside NIMH’s dissemination and implementation funding stream to address eating disorder specific questions.

    • We need significant expansion of research studying clinically relevant questions with diverse populations to understand to what degree treatments that were developed with predominantly white, female populations can be applied (or need to be modified) to meet the needs of all people who struggle with eating pathology.

    • We need increased research investigating how to translate nomothetic treatments (i.e., treatments developed based on averages) into idiographic (i.e., treatments developed and personalized based on the individual) evidence-based treatment.

    • We need to make it easier to present and publish negative findings.

    • Eating disorders researchers should be encouraged to freely share pre or post prints so that clinicians and service users may have unrestricted access to the research.

    • We need increased research on low-cost, scalable interventions and to study novel strategies aimed at creating broad public health impact (Table 4).

Table 4 Goals and strategies for research and research funding

Section V: advocacy, education, and legislation

The Status Quo There are a number of organizations in the eating disorders community whose Mission Statements include and whose leadership and membership groups have long been committed to: (1) promoting state and federal legislative initiatives relating to eating disorders research, training, treatment, and awareness; (2) advocating on behalf of eating disorders sufferers with respect to issues including early intervention, greater accessibility to affordable, evidence-based care, and enhanced insurer reimbursement for treatment; and (3) educating parents, students, teachers, coaches, and frontline health care providers on best practices relating to the early detection, treatment, and risks associated with these life-threatening illnesses.Footnote 2

There also are dozens of websites, webpages, and social media based private and public groups, whose participants serve as zealous advocates, offer peer-to-peer and/or professional support, and provide educational resources on behalf of those who are battling or in recovery from eating disorders and the loved ones committed to supporting them, as well as those seeking to learn more about these often overlooked and frequently misunderstood illnesses.Footnote 3 Finally, there are countless individuals with lived experience, tech savvy clinicians, bloggers, and others who consistently use their voices and platforms to raise awareness, promote education, and actively lobby on all matters eating disorder related.

Despite the selfless and tireless efforts of these individuals and organizations, however, federal and state governments have been slow to take a proactive role in addressing the myriad needs confronting the eating disorders community. Indeed, notwithstanding the fact that eating disorders advocates have been aggressively pursuing federal legislative assistance since the introduction of the Federal Response to Eliminate Eating Disorders Act (FREED Act) in 2009Footnote 4 and introduced similar legislation again in 2011,Footnote 5 2013Footnote 6 and 2015Footnote 7; it wasn’t until December, 2016, when President Obama signed the twenty-first Century Cures Act into law that the words “eating disorders” first appeared in a piece of enacted federal legislation in the U.S.

Make no mistake, that legislation is significant in that it: (1) clarifies that insurance coverage of eating disorders treatment is subject to the parity provisions of the Mental Health Parity and Addiction Equity Act (MHPAEA); and (2) articulates the need for and plans to better educate medical professionals and the general public about early identification of eating disorders [15]. However, there is considerable work to be done in advancing and funding the ground-breaking research and other educational initiatives that were integral pieces to the FREED Act and addressing the plethora of other needs confronting those suffering from and of those who have dedicated their professional lives to better understanding and treating these illnesses.

Consensus Point When it comes to core issues affecting all sufferers of eating disorders (e.g., benefit of early intervention; reasonable accessibility to evidence-based care; quality and affordability of care; need for research, increased public awareness and support, and legislative initiatives) those afflicted with eating disorders, their loved ones, and the eating disorders community as a whole would benefit from speaking with a unified voice (Table 5).

Table 5 Goals and strategies for advocacy, education, and legislation

Conclusions

The Summit culminated in a Report which serves as the basis of this manuscript. The authors agree that there are many finer points that merit further consideration and details that need to be fully elucidated in order to enact any of the proposed recommendations. However, there was broad-based consensus on the below points regarding the eating disorders field and how best to advance it.

  • Eating disorder outcomes and prevention efforts can be improved by implementing creative health education initiatives that focus on societal perceptions, early detection, and timely, effective intervention. Such initiatives should be geared toward parents/guardians, families, other caretakers, and frontline healthcare providers in order to maximize impact.

  • Those afflicted with eating disorders, their loved ones, and the eating disorders community as a whole would benefit from greater accessibility to affordable quality care, as well as greater transparency and accountability on the part of in-hospital, residential, and outpatient health care providers with respect to their qualifications, methodologies, and standardized outcomes.

  • Those afflicted with eating disorders, their loved ones, health care providers, and the eating disorders community as a whole, would benefit from the establishment and maintenance of treatment program accreditation, professional credentialing, and treatment type and levels of care guidelines as has been outlined by groups of eating disorder professionals outside the US [16].

  • The establishment and implementation of effective, empirically/evidence-based standards of care requires research across a broad spectrum of domains (e.g., epidemiology, genetics, neurobiology, medicine, behavior, psychology, sociology, neuroscience), a diverse range of populations, adequate private and government funding, and the free exchange of ideas and information among all who share a commitment to understanding, treating, and, ultimately, markedly diminishing the negative impact of eating disorders.

  • The “eating disorder stereotype” has limited the field’s definition of eating disorders and eating disorders research. It also limits the perceived public health impact of eating disorders, impacts perceptions of who gets diagnosed with an eating disorder, and contributes to the perception that “disordered eating” and eating disorders are fundamentally different (versus representing different points on a spectrum of eating behavior ranging from normal/healthy to extremely pathological). This has led to barriers and delays in providing care related to eating behaviors and cognitions.

  • One first step in improving the eating disorders field with respect to research and funding is to reclassify eating disorders as ESD to encompass the full spectrum of eating pathology.

  • The eating disorders research field would benefit from greater participation in wider mental health research at all levels (conferences, leadership in generalist mental health organizations, publication in generalist journals, participation in generalist editorial boards and NIH study sections; regular dialogue with CDC).

  • Several key limitations in the eating disorders research literature must be addressed.

  • When it comes to core issues affecting all sufferers of eating disorders (e.g., the benefit of early intervention, reasonable accessibility to evidence-based care, the quality and affordability of care, the need for research, increased public awareness and support, and legislative initiatives) those afflicted with eating disorders, their loved ones, and the eating disorders community as a whole would benefit from speaking with a unified voice.

Limitations The authors readily acknowledge that there is room to disagree over a word, a phrase, a sentence or, perhaps, even a recommendation (or two) in this paper. They also recognize that not everyone in the field will necessarily agree with every recommendation in this paper. Indeed, some people who agreed with some sections chose not to endorse the Report and Recommendations upon which it is predicated because they also disagreed with other sections. In such cases, we hope that people will nonetheless come together where they find agreement.

Another limitation is that this paper and the underlying Report are (by design) U.S.-Centric. Consequently, while it is it is likely that many recommendations will benefit the global eating disorders field, not all will. In addition, although an effort was made to include a wide range of constituents during the Summit, a decision was made to limit the number of participants to around 25 so that the number of individuals did not become unwieldy. By definition, this means that not everyone who is a member of our field, including, but not limited to, those from other countries, will see themselves represented in the authors. This too is a limitation. As noted earlier, however, we view this paper and the Report on which it is predicated as a first step, not a final step in generating collaboration.

The authors also acknowledge that there is still much work to be done when it comes to tackling the myriad of issues confronting the diverse needs of those caught in the grip of these insidious illnesses. However, given the gravity and urgency of the situation and the preciousness of the lives hanging in the balance, the consensus among the Summit participants is that: (1) the status quo is unacceptable; (2) the need for a thoughtful and unified plan of action is immediate; and (3) the time for meaningful progress is long overdue. Thus, the Summit participants’ hope is that this paper and the Report on which it is predicated will serve as a catalyst for further consensus-building and a blueprint for hope and healing for years to come.Footnote 8

Availability of data and materials

Not applicable.

Notes

  1. 1.

    While the substance of the Report and Recommendations has been preserved and is presented herein, certain changes in formatting and wording were made to the original Report to conform to publication standards. A copy of the original Report and Recommendations can be found at https://osf.io/bh94w/.

  2. 2.

    Those organizations include, among others: the National Eating Disorders Association (NEDA), the Academy for Eating Disorders (AED), The Alliance for Eating Disorders Awareness, the Eating Disorders Coalition (EDC), Families Empowered and Supporting Treatment for Eating Disorders (F.E.A.S.T.), the International Association of Eating Disorders Professionals (iaedp), the National Association of Anorexia Nervosa and Associated Disorders (ANAD), Project HEAL, the Multi-Service Eating Disorders Association (MEDA) and the Residential Eating Disorders Consortium (REDC).

  3. 3.

    Some of those resources include: ATDTfb—Eating Disorder Family and Carer Support (https://www.facebook.com/groups/ATDTCarerSupportGroup); Mothers Against Anorexia Nervosa and Bulimia Nervosa (https://www.facebook.com/Mothers-Against-Anorexia-and-Bulimia-1578282975793738); Eating Disorder AN, BED BN & EDNOS Recovery Support Group (https://www.facebook.com/groups/edrecoverymentalhealthsupport); Sockit To ED https://www.facebook.com/groups/SockitToEDglobal); and World Eating Disorders Day (https://www.facebook.com/WorldEatingDisordersDay)—to name only a few.

  4. 4.

    If passed, that Act would have required the National Institutes of Health (“NIH”) to take myriad steps, the most notable of which included: (1) compiling statistics on the economic cost of eating disorders; (2) consulting with eating disorder researchers to implement a comprehensive long term plan for research on eating disorders; (3) annually submitting to Congress a scientifically-justified budget on eating disorders research; (4) establishing “Centers of Excellence” for the purpose of training researchers and conducting research; and (5) creating a clearinghouse for eating disorder research information at the Center for Disease Control and Prevention.

  5. 5.

    Like its predecessor, the 2011 version of the Act contemplated sweeping initiatives coordinated through NIH in the areas of: (1) eating disorder research aimed at identifying and classifying eating disorders, ferreting out the causes of eating disorders and establishing guidelines for their diagnosis, early detection, and treatment; (2) the development and evaluation of new treatment protocols and best practices; (3) a comprehensive assessment of existing eating prevention programs and the development of reliable prevention and screening programs; (4) a strategic plan for the conduct of, and support for, eating disorder research, including proposed budgetary recommendations, an award of federal grants for the purpose of improving the collection, analysis and reporting of State epidemiological data on eating disorders, and a joint study on the impact eating disorders have on educational advancement and achievement beginning in elementary schools.

  6. 6.

    The 2013 Act had a heavy emphasis on research aimed at better understanding, diagnosing, and treating eating disorders and how to more quickly identify and intervene in them in the lives of those afflicted.

  7. 7.

    The 2015 bill, dubbed the Anna Westin Act, marked a notable shift in focus away from research and collaboration. Instead, broadly construed, it sought “clarification” that, pursuant to the Mental Health Parity Act of 2008 (“MHPAEA”), a group health plan or policy that afforded coverage for eating disorders necessarily had to include residential treatment.

  8. 8.

    Notably, the Summit participants were asked to contribute a “Legacy List” of 10 of the most important lessons, pieces of advice, or practice tips relating to eating disorders that they’ve learned, been given, or used in the course of their work in the field. Those lists will be collated and published at a later date as a stand-alone resource.

Abbreviations

ACCME:

Accreditation Council for Continuing Medical Education

AED:

Academy for eating disorders

AN:

Anorexia nervosa

ANAD:

National Association of Anorexia Nervosa and Associated Disorders

APA:

American Psychological Association

ARFID:

Avoidant/restrictive food intake disorder

BED:

Binge-eating disorder

BGES:

Behavioral genetics and epidemiology

BMI:

Body mass index

BN:

Bulimia nervosa

BRLE:

Biobehavioral regulation, learning, and ethology

CARF:

Commission on accreditation of rehabilitation facilities

CMS:

Centers for Medicare and Medicaid Services

CDC:

Centers for disease control

DSM-5:

Diagnostic and statistical manual of mental disorders, fifth edition

EDC:

Eating disorders coalition for research, policy and action

EDLS:

Eating disorders leadership summit

EDE-Q:

Eating disorder examination-questionnaire

EDRS:

Eating disorder research society

ESD:

Eating spectrum disorders

F.E.A.S.T:

Families empowered and supporting treatment for eating disorders

FREED Act:

Federal response to eliminate eating disorders act

GAD-7:

Generalized anxiety disorder-7

HiTOP:

Hierarchical taxonomy of psychopathology

Iaedp:

International Association of Eating Disorder Professionals

ICED:

International conference on eating disorders

JCAHO:

Joint Commission on Accreditation of Healthcare Organizations

MHPAEA:

Mental Health Parity and Addiction Equity Act

NASMHPD:

National Association of State Mental Health Program Directors

NCEED:

National Center of Excellence for Eating Disorders

NEDA:

National Eating Disorders Association

NIH:

National Institutes of Health

NIMH:

National Institute of Mental Health

PDRP:

Psychosocial development, risk, and prevention

PHQ-8:

Patient health questionnaire-8

REDC:

Residential eating disorders consortium

US:

United States

YRBS:

National youth risk behavior survey

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Acknowledgements

The authors especially acknowledge Kimberly Osborn, Graduate Research Assistance for her editorial contributions relating to the references cited in the manuscript.

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The Legacy of Hope Report and Recommendations is a consensus-based document that, during the editorial process, involved contributions from all Summit Participants. Moreover, all authors read and approved the final manuscript.

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Correspondence to Donald Blackwell.

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Blackwell, D., Becker, C., Bermudez, O. et al. The legacy of hope summit: a consensus-based initiative and report on eating disorders in the U.S. and recommendations for the path forward. J Eat Disord 9, 145 (2021). https://doi.org/10.1186/s40337-021-00501-w

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Keywords

  • Anorexia nervosa
  • Bulimia nervosa
  • Binge-eating disorder
  • Avoidant/restrictive food intake disorder
  • Advocacy
  • Standards
  • Body image