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.

Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality

“…The US context is overrepresented in ED research, meaning research occurring within this country’s non-single-payer healthcare system predominates. In the USA, healthcare coverage is not guaranteed, and ED treatment is accessed primarily through private health insurance and self-payment (16); ED treatment is limited for uninsured or publicly insured individuals [ 45 , 46 ]. Differences in treatment access and structure internationally may contribute to mismatches between how EDs and recovery are conceptualised and the realities of the treatment landscapes many people with EDs face.…”

“…Individuals who present at higher weights, those considered not critically ill enough or too critically ill, patients who previously had poor treatment outcomes, or those with physical or psychiatric co-occurring diagnoses may be viewed as too complex, denied support [ 10 – 12 ], and/or directed towards a palliative or hospice care pathway [ 52 , 53 ]. These systemic restrictions [ 11 , 16 ] can prevent access to timely and appropriate care and, in many cases, access to any care at all [ 46 , 54 ] in ways that differ across national contexts [ 55 – 57 ]. These differences further complicate any attempts to create inclusive criteria for assessing ED recovery, staging, treatment responsiveness, or the potential for ‘terminality’ that are appropriate for individuals with diverse identities and experiences.…”

“…In studies assessing lived experience perspectives, there appear to be differences between those who do and do not experience formal treatment for EDs both in terms of how they talk about EDs and recovery [ 67 , 68 ] and potentially how they experience EDs. Social narratives are influential in shaping assumptions about ED presentation and experiences in treatment, where the ED ‘stereotype’ [ 46 , 69 ] is particularly salient and may play a role in how some individuals identify with aspects of recovery and/or illness. Quality-of-life is often a central concern for those experiencing what becomes known as ‘recovery’ [ 70 ], though it is not always included in clinical remission perspectives.…”

“…Some existing models of care may not consider cooccurring psychological symptoms and impacts, which, if under-addressed or unresolved, may impede ED recovery. While treatment models have been developed to address EDs and co-occurring diagnoses [80,[163][164][165][166][167], many such approaches have not been integrated into mainstream treatment for EDs [46]. Widely used treatment models enforce inflexible 'behavioural protocols' and emphasise 'focusing on the ED first' at the expense of meeting the treatment needs of some individuals [80] who may otherwise benefit from approaches that address self-concept and embodiment (which can be disrupted and disembodied in individuals with EDs) [168].…”

Inaccessibility of care and inequitable conceptions of suffering: a collective response to the construction of “terminal” anorexia nervosa

“…This is especially consequential given that an estimated 8 out of 10 or more individuals with EDs never receive care at any level [ 24 ] so access to “a full course of treatment” is a privilege, not the norm. In the US, multi-disciplinary treatment is frequently prohibitively expensive– even for those who are insured, scholarships are rare, and discharges and step-downs are often mandated by insurance rather than medical and psychological readiness [ 25 ]. As a result, the “high-quality multidisciplinary” ED care endorsed by Yager et al [ 5 , p. 2] is not typical [ 8 , 24 , 26 , 27 ].…”