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 framework to conceptualize personal recovery from eating disorders: A systematic review and qualitative meta-synthesis of perspectives from individuals with lived experience.

BACKGROUND: An extensive literature exists describing treatment interventions and recovery from eating disorders (EDs); however, this body of knowledge is largely symptom-based and from a clinical perspective and thus limited in capturing perspectives and values of individuals with lived experience of an ED. In this study, we performed a systematic review to coproduce a conceptual framework for personal recovery from an ED based on primary qualitative data available in published literature. METHODS: A systematic review and qualitative meta-synthesis approach was used. Twenty studies focusing on ED recovery from the perspective of individuals with lived experience were included. The studies were searched for themes describing the components of personal recovery. All themes were analyzed and compared to the established connectedness; hope and optimism about the future; identity; meaning in life; and empowerment (CHIME) and Substance Abuse and Mental Health Services Administration (SAMHSA) frameworks of recovery, which are applicable to all mental disorders. Themes were labeled and organized into a framework outlining key components of the ED personal recovery process. RESULTS: Supportive relationships, hope, identity, meaning and purpose, empowerment, and self-compassion emerged as the central components of the recovery process. Symptom recovery and its relationship to the personal recovery process are also significant. DISCUSSION: Individuals with lived experience of EDs noted six essential elements in the personal ED recovery process. This framework is aligned with several of the key components of the CHIME and SAMHSA frameworks of recovery, incorporating person-centered elements of the recovery process. Future research should validate these constructs and develop instruments (or tools) that integrate the lived experiences into a measurement of recovery from an ED.

ANTECEDENTES: Existe una extensa literatura que describe las intervenciones de tratamiento y la recuperación de los trastornos de la conducta alimentaria (TCA); sin embargo, este conjunto de conocimientos se basa en gran medida en los síntomas y además desde una perspectiva clínica y, por lo tanto, es limitado para capturar las perspectivas y los valores de las personas con experiencia vivida de un TCA. En este estudio, realizamos una revisión sistemática para coproducir un marco conceptual para la recuperación personal de un TCA basado en datos cualitativos primarios disponibles en la literatura publicada. MÉTODOS: Se utilizó una revisión sistemática y un enfoque de meta-síntesis cualitativa. Se incluyeron veinte estudios centrados en la recuperación del TCA desde la perspectiva de individuos con experiencia vivida. Se buscaron en los estudios temas que describieran los componentes de la recuperación personal. Todos los temas fueron analizados y comparados con los marcos de recuperación establecidos de CHIME y SAMHSA, que son aplicables a todos los trastornos mentales. Los temas fueron etiquetados y organizados en un marco que describe los componentes clave del proceso de recuperación personal del TCA. RESULTADOS: las relaciones de apoyo, la esperanza, la identidad, el significado y el propósito, el empoderamiento y la autocompasión surgieron como los componentes centrales del proceso de recuperación. La recuperación de los síntomas y su relación con el proceso de recuperación personal también es significativa. CONCLUSIONES: Las personas con experiencia vivida de un TCA destacaron por seis elementos esenciales en el proceso personal de recuperación del TCA. Este marco está alineado con varios de los componentes clave de los marcos de recuperación de CHIME y SAMHSA, incorporando elementos centrados en la persona del proceso de recuperación. La investigación futura debería validar estos constructos y desarrollar instrumentos (o herramientas) que integren las experiencias vividas en una medición de recuperación de un TCA.

Weight Loss and Illness Severity in Adolescents With Atypical Anorexia Nervosa.

BACKGROUND: Lower weight has historically been equated with more severe illness in anorexia nervosa (AN). Reliance on admission weight to guide clinical concern is challenged by the rise in patients with atypical anorexia nervosa (AAN) requiring hospitalization at normal weight. METHODS: We examined weight history and illness severity in 12- to 24-year-olds with AN (n = 66) and AAN (n = 50) in a randomized clinical trial, the Study of Refeeding to Optimize Inpatient Gains (www.clinicaltrials.gov; NCT02488109). Amount of weight loss was the difference between the highest historical percentage median BMI and admission; rate was the amount divided by duration (months). Unpaired t tests compared AAN and AN; multiple variable regressions examined associations between weight history variables and markers of illness severity at admission. Stepwise regression examined the explanatory value of weight and menstrual history on selected markers. RESULTS: Participants were 16.5 ± 2.6 years old, and 91% were of female sex. Groups did not differ by weight history or admission heart rate (HR). Eating Disorder Examination Questionnaire global scores were higher in AAN (mean 3.80 [SD 1.66] vs mean 3.00 [SD 1.66]; P = .02). Independent of admission weight, lower HR (ß = -0.492 [confidence interval (CI) -0.883 to -0.100]; P = .01) was associated with faster loss; lower serum phosphorus was associated with a greater amount (ß = -0.005 [CI -0.010 to 0.000]; P = .04) and longer duration (ß = -0.011 [CI -0.017 to 0.005]; P = .001). Weight and menstrual history explained 28% of the variance in HR and 36% of the variance in serum phosphorus. CONCLUSIONS: Weight history was independently associated with markers of malnutrition in inpatients with restrictive eating disorders across a range of body weights and should be considered when assessing illness severity on hospital admission.

Screening and offering online programs for eating disorders: Reach, pathology, and differences across eating disorder status groups at 28 U.S. universities.

OBJECTIVE: The Internet-based Healthy Body Image (HBI) Program, which uses online screening to identify individuals at low risk of, high risk of, or with an eating disorder (ED) and then directs users to tailored, evidence-based online or in-person interventions to address individuals' risk or clinical status, was deployed at 28 U.S. universities as part of a randomized controlled trial. The purpose of this study is to report on: (a) reach of HBI, (b) screen results, and (c) differences across ED status groups. METHOD: All students on participating campuses ages 18 years or older were eligible, although recruitment primarily targeted undergraduate females. RESULTS: The screen was completed 4,894 times, with an average of 1.9% of the undergraduate female student body on each campus taking the screen. ED risk in participating students was high-nearly 60% of students screened were identified as being at high risk for ED onset or having an ED. Key differences emerged across ED status groups on demographics, recruitment method, ED pathology, psychiatric comorbidity, and ED risk factors, highlighting increasing pathology and impairment in the high-risk group. DISCUSSION: Findings suggest efforts are needed to increase reach of programs like HBI. Results also highlight the increasing pathology and impairment in the high-risk group and the importance of programs such as HBI, which provide access to timely screening and intervention to prevent onset of clinical EDs.

Facebook usage among those who have received treatment for an eating disorder in a group setting.

OBJECTIVE: This study explored Facebook use among individuals with a history of receiving treatment for an eating disorder (ED) in a group setting (e.g., inpatient, residential, outpatient group), focusing primarily on comparisons individuals make about their bodies, eating, or exercise to those of their peers from treatment on Facebook and the relation between these comparisons and ED pathology. METHOD: Individuals (N = 415; mean age 28.15 years ± 8.41; 98.1% female) who self-reported receipt of ED treatment in a group setting were recruited via e-mail and social media to complete an online survey. RESULTS: Participants reported having an average of 10-19 Facebook friends from treatment and spending up to 30 min per day interacting on Facebook with individuals from treatment or ED-related organizations. More comparison to treatment peers on Facebook was associated with greater ED psychopathology and ED-related impairment. Conversely, positive interaction with treatment peers on Facebook was associated with lower ED psychopathology and ED-related impairment. Individuals who had been in treatment longer, more times, and more recently had more Facebook friends from treatment and ED-related organizations as well as spent more time in ED groups' pages on Facebook. Few participants (19.5%) reported that a therapist asked about the impact of Facebook on pathology. DISCUSSION: Interactions on Facebook could affect patients' recovery and potential for relapse. It may be helpful for treatment providers to discuss Facebook use and its potential benefits and drawbacks with patients preparing for discharge from group treatment. © 2016 Wiley Periodicals, Inc. (Int J Eat Disord 2016; 49:764-777).

A Guided Online and Mobile Self-Help Program for Individuals With Eating Disorders: An Iterative Engagement and Usability Study.

BACKGROUND: Numerous digital health interventions have been developed for mental health promotion and intervention, including eating disorders. Efficacy of many interventions has been evaluated, yet knowledge about reasons for dropout and poor adherence is scarce. Most digital health intervention studies lack appropriate research design and methods to investigate individual engagement issues. User engagement and program usability are inextricably linked, making usability studies vital in understanding and improving engagement. OBJECTIVE: The aim of this study was to explore engagement and corresponding usability issues of the Healthy Body Image Program-a guided online intervention for individuals with body image concerns or eating disorders. The secondary aim was to demonstrate the value of usability research in order to investigate engagement. METHODS: We conducted an iterative usability study based on a mixed-methods approach, combining cognitive and semistructured interviews as well as questionnaires, prior to program launch. Two separate rounds of usability studies were completed, testing a total of 9 potential users. Thematic analysis and descriptive statistics were used to analyze the think-aloud tasks, interviews, and questionnaires. RESULTS: Participants were satisfied with the overall usability of the program. The average usability score was 77.5/100 for the first test round and improved to 83.1/100 after applying modifications for the second iteration. The analysis of the qualitative data revealed five central themes: layout, navigation, content, support, and engagement conditions. The first three themes highlight usability aspects of the program, while the latter two highlight engagement issues. An easy-to-use format, clear wording, the nature of guidance, and opportunity for interactivity were important issues related to usability. The coach support, time investment, and severity of users' symptoms, the program's features and effectiveness, trust, anonymity, and affordability were relevant to engagement. CONCLUSIONS: This study identified salient usability and engagement features associated with participant motivation to use the Healthy Body Image Program and ultimately helped improve the program prior to its implementation. This research demonstrates that improvements in usability and engagement can be achieved by testing and adjusting intervention design and content prior to program launch. The results are consistent with related research and reinforce the need for further research to identify usage patterns and effective means for reducing dropout. Digital health research should include usability studies prior to efficacy trials to help create more user-friendly programs that have a higher likelihood of "real-world" adoption.