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

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. 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.

A prevalence study and description of alli use by patients with eating disorders.

OBJECTIVE: This study examined the frequency and characteristics of alli use among patients in eating disorder treatment facilities. METHOD: Patients from five treatment centers completed the Survey of Eating and Related Behaviors. Diagnoses were determined from survey responses. RESULTS: Of 417 survey respondents, 26 (6.2%) reported a history of alli use. Of those, 15 (57.7%) met criteria for an eating disorder, including one of 29 patients (3.4%) with anorexia nervosa binge-purge subtype, six of 66 patients (9.1%) with full or subthreshold bulimia nervosa, four of 49 (8.2%) with binge eating disorder, one of six (16.7%) with purging disorder, and three of 80 (3.8%) with an eating disorder not otherwise specified. DISCUSSION: The results of this survey suggest that patients with eating disorders use alli, albeit relatively uncommonly. Therefore, it is worthwhile for clinicians to inquire about alli use when evaluating or treating these patients in any clinical setting.

Influence of stress in the onset of eating disorders: data from a two-stage epidemiologic controlled study.

BACKGROUND: We explore the role of stress in the onset of eating disorders (EDs) in a community sample of adolescents, the mediating role of psychiatric comorbidity and the quantitative evolution of stress in the year preceding the onset of an ED. METHODS: The Life Events and Difficulties Schedule interview was applied to a sample with 32 cases and 32 controls selected from a two-phase epidemiologic study among a representative population of adolescents, followed by a decay model to assess acute and chronic stress in the year preceding the onset of ED. Psychiatric comorbidity was assessed using the SCAN interview. RESULTS: Cases (46.9%) and 9.4% of controls were found to have associated psychiatric comorbidity (chi2 = 11.74, p = .001). Of cases, 6.3% and none of the controls had at least one severe stressful event (N.S). Of cases, 18.8% and 3.1% of controls had at least one major difficulty (Fisher exact test = 0.05). Of cases, 25% and 3.1% of controls had a provoking stressful agent (Fisher exact test = 0.026). Psychiatric comorbidity partially mediated the relationship between stress and EDs. The Structural Equation Modeling Analysis shows that chronic stress is strongly associated with the onset of EDs, both directly (r(2) = 0.38) and indirectly, through psychiatric comorbidity (r2 = 0.56). CONCLUSION: Chronic stress and psychiatric comorbidity are strongly associated with the onset of EDs. Psychiatric comorbidity is a partial mediating factor in the association of stress with eating disorders.

Case series: outbreak of conversion disorder among amish adolescent girls.

OBJECTIVE: Outbreak investigations are challenging in a cross-cultural context, and outbreaks of psychiatric disease are rare in any community. We investigated a cluster of unexplained debilitating illness among Amish girls. METHOD: We reviewed the medical records of cases, consulted with health care providers, performed active case finding, administered open-ended and structured interviews, and met with Amish community members. A case-patient was defined as a resident of the county who was bedridden for more than 3 weeks with otherwise unexplained systemic weakness and anorexia from January 2000 to February 2002. RESULTS: Five case-patients were identified. All were Amish girls aged 9 to 13 years. All five had debilitating voluntary motor deficits, anorexia, and weight loss. Four experienced neck weakness with inability to hold up their heads. Thorough medical evaluations failed to identify an organic etiology. All five patients met the diagnostic criteria for conversion disorder. Substantial social conflict within the Amish community preceded illness onset. Family behavioral interventions were recommended. Three months after the investigation, four of five patients demonstrated some improvement. CONCLUSIONS: Clinicians should be aware of the potential for outbreaks of psychogenic illness and work to address the challenges of developing effective intervention strategies, particularly in the cross-cultural context.

How should the clinician evaluate and manage the cardiovascular complications of anorexia nervosa?

Five to twenty percent of patients with anorexia nervosa die from their illness. One half of those patients die of medical complications (Steinhavsen, 2002). Malnutrition, dehydration, and electrolyte abnormalities may precipitate death by inducing heart failure or fatal arrhythmias. Patients and their families commonly call upon physicians to evaluate acute and ongoing risks of malnutrition and purging behaviors. Concerns about medical compromise currently tend to determine or influence insurance coverage of medical and psychiatric treatment of patients with eating disorders. There is very limited published data to guide clinicians in the evaluation, ongoing monitoring, or treatment. Surprisingly, no consensus exists regarding recommendations for either the ongoing evaluation of cardiac parameters or the clinical implications of common findings.