Sociodemographic and clinical characteristics of treated and untreated adults with bulimia nervosa or binge-eating disorder recruited for a large-scale research study.

BACKGROUND: Eating disorders affect millions of people worldwide, but most never receive treatment. The majority of clinical research on eating disorders has focused on individuals recruited from treatment settings, which may not represent the broader population of people with eating disorders. This study aimed to identify potential differences in the characteristics of individuals with eating disorders based on whether they self-reported accessing treatment or not, in order to contribute to a better understanding of their diverse needs and experiences. METHODS: The study population included 762 community-recruited individuals (85% female, M ± SD age = 30 ± 7 years) with bulimia nervosa or binge-eating disorder (BN/BED) enrolled in the Binge Eating Genetics Initiative (BEGIN) United States study arm. Participants completed self-report surveys on demographics, treatment history, past and current eating disorder symptoms, weight history, and their current mental health and gastrointestinal symptoms. Untreated participants (n = 291, 38%) were compared with treated participants (n = 471, 62%) who self-reported accessing BN/BED treatment at some point in their lives. RESULTS: Untreated participants disproportionately self-identified as male and as a racial or ethnic minority compared with treated participants. Treated participants reported a more severe illness history, specifically, an earlier age at onset, more longstanding and frequent eating disorder symptoms over their lifetime, and greater body dissatisfaction and comorbid mental health symptoms (i.e., depression, anxiety, ADHD) at the time of the study. A history of anorexia nervosa was positively associated with treatment engagement. Individuals self-reporting a history of inpatient or residential treatment exhibited the most severe illness history, those with outpatient treatment had a less severe illness history, and untreated individuals had the mildest illness history. CONCLUSIONS: Historically overlooked and marginalized populations self-reported lower treatment access rates, while those who accessed treatment reported more severe eating disorder and comorbid mental health symptoms, which may have motivated them to seek treatment. Clinic-based recruitment samples may not represent individuals with milder symptoms or racial and ethnic diversity, and males. Community-based recruitment is crucial for improving the ability to apply research findings to broader populations and reducing disparities in medical research. Trial Registration ClinicalTrials.gov NCT04162574 ( https://clinicaltrials.gov/ct2/show/NCT04162574 ).

The majority of individuals with eating disorders never enter treatment. However, most clinical research on eating disorders recruits participants from clinics and treatment centers. Therefore, most of our knowledge about eating disorders may not represent the majority of people with eating disorders, particularly those who do not enter treatment. We studied 762 people with bulimia nervosa or binge-eating disorder recruited from the community to a large research study. We compared participants who reported never accessing treatment (38%) to participants who reported having accessed treatment at some point in their lives (62%). Untreated participants were much more likely to identify as male and as a racial or ethnic minority compared with participants who had accessed treatment (who identified mostly as female and White). Participants who had accessed treatment had a more severe illness history and higher levels of body dissatisfaction and mental health symptoms at the time of the study. The present study highlights the importance of recruiting research participants from the community to clinical studies as a way to address medical inequity in marginalized and underrepresented groups. Additionally, caution is advised when generalizing research findings from research samples who have sought treatment to all people with eating disorders.

Sociodemographic and Clinical Characteristics of Treated and Untreated Adults with Bulimia Nervosa and/or Binge-eating Disorder Recruited for a Large-Scale Research Study.

Background: Eating disorders affect millions of people worldwide, but most never receive treatment. The majority of clinical research on eating disorders has focused on individuals recruited from treatment settings, which may not represent the broader population of people with eating disorders. This study compared the characteristics of individuals with eating disorders based on whether they self-reported accessing treatment or not, to identify potential differences and contribute to a better understanding of the diverse needs and experiences of individuals with eating disorders. Methods: The study population included 762 community-recruited individuals (85% female, M ± SD age = 30 ± 7 y) with bulimia nervosa and/or binge eating disorder (BN/BED) enrolled in the Binge-Eating Genetics Initiative (BEGIN) United States study arm. Participants completed self-report surveys on demographics, treatment history, past and current eating disorder symptoms, weight history, and current mental health and gastrointestinal comorbidity. Untreated participants ( n = 291, 38%) were compared with treated participants ( n = 471, 62%) who self-reported accessing BN/BED treatment at some point in their lives. Results: Untreated participants disproportionately self-identified as male and as a racial or ethnic minority compared with treated participants. Treated participants reported a more severe illness history, specifically, an earlier age at onset, more longstanding and frequent ED symptoms over their lifetime, and higher body dissatisfaction and comorbid mental health symptoms (i.e., depression, anxiety, ADHD) at the time of the study. Those who reported a history of inpatient or residential treatment displayed the most severe illness history, whereas those who reported outpatient treatment had a less severe illness history, and untreated individuals had the mildest illness history. Conclusions: Individuals from historically overlooked or marginalized populations were less likely to access treatment. Those who accessed treatment had more severe ED and comorbid symptoms, which may have motivated them to seek treatment. Clinic-based recruitment samples may not accurately represent all individuals with EDs, particularly those with milder symptoms and those with gender or racial/ethnic diversity. The results of this study indicate that community-based recruitment is crucial for improving the ability to apply research findings to broader populations and to reduce disparities in medical research. Trial Registration : ClinicalTrials.gov NCT04162574 (https://clinicaltrials.gov/ct2/show/NCT04162574).

Binge-eating disorder with and without lifetime anorexia nervosa: A comparison of sociodemographic and clinical features.

OBJECTIVE: To compare individuals who have experienced binge-eating disorder (BED) and anorexia nervosa (AN) (BED AN+) to those who have experienced BED and not AN (BED AN-). METHOD: Participants (N = 898) met criteria for lifetime BED and reported current binge eating. Approximately 14% had a lifetime diagnosis of AN. Analyses compared BED AN+ and BED AN- on sociodemographic variables and clinical history. RESULTS: The presence of lifetime AN was associated with more severe eating disorder symptoms, including earlier onset, more frequent, more chronic, and more types of eating disorder behaviors over the lifetime, as well as a higher lifetime prevalence of bulimia nervosa (BN). Participants with lifetime AN reported being more likely to have received treatments for BED or BN, had significantly lower minimum, current, and maximum BMIs, had more severe general anxiety, and were significantly more likely to be younger and female. In the full sample, the lifetime prevalence of unhealthy weight control behaviors was high and treatment utilization was low, despite an average 15-year history since symptom onset. Gastrointestinal disorders and comorbid anxiety, depression, and attention-deficit/hyperactivity disorder symptoms were prevalent. DISCUSSION: Individuals fared poorly on a wide array of domains, yet those with lifetime AN fared considerably more poorly. All patients with BED should be screened for mental health and gastrointestinal comorbidities and offered referral and treatment options. PUBLIC SIGNIFICANCE: Individuals experiencing binge-eating disorder have severe symptomology, but those who have experienced binge-eating disorder and anorexia nervosa fare even more poorly. Our study emphasizes that patients with binge-eating disorder would benefit from being screened for mental health and gastrointestinal comorbidities, and clinicians should consider history of unhealthy weight control behaviors to inform treatment and relapse prevention.

Passive Sensor Data for Characterizing States of Increased Risk for Eating Disorder Behaviors in the Digital Phenotyping Arm of the Binge Eating Genetics Initiative: Protocol for an Observational Study.

BACKGROUND: Data that can be easily, efficiently, and safely collected via cell phones and other digital devices have great potential for clinical application. Here, we focus on how these data could be used to refine and augment intervention strategies for binge eating disorder (BED) and bulimia nervosa (BN), conditions that lack highly efficacious, enduring, and accessible treatments. These data are easy to collect digitally but are highly complex and present unique methodological challenges that invite innovative solutions. OBJECTIVE: We describe the digital phenotyping component of the Binge Eating Genetics Initiative, which uses personal digital device data to capture dynamic patterns of risk for binge and purge episodes. Characteristic data signatures will ultimately be used to develop personalized models of eating disorder pathologies and just-in-time interventions to reduce risk for related behaviors. Here, we focus on the methods used to prepare the data for analysis and discuss how these approaches can be generalized beyond the current application. METHODS: The University of North Carolina Biomedical Institutional Review Board approved all study procedures. Participants who met diagnostic criteria for BED or BN provided real time assessments of eating behaviors and feelings through the Recovery Record app delivered on iPhones and the Apple Watches. Continuous passive measures of physiological activation (heart rate) and physical activity (step count) were collected from Apple Watches over 30 days. Data were cleaned to account for user and device recording errors, including duplicate entries and unreliable heart rate and step values. Across participants, the proportion of data points removed during cleaning ranged from <0.1% to 2.4%, depending on the data source. To prepare the data for multivariate time series analysis, we used a novel data handling approach to address variable measurement frequency across data sources and devices. This involved mapping heart rate, step count, feeling ratings, and eating disorder behaviors onto simultaneous minute-level time series that will enable the characterization of individual- and group-level regulatory dynamics preceding and following binge and purge episodes. RESULTS: Data collection and cleaning are complete. Between August 2017 and May 2021, 1019 participants provided an average of 25 days of data yielding 3,419,937 heart rate values, 1,635,993 step counts, 8274 binge or purge events, and 85,200 feeling observations. Analysis will begin in spring 2022. CONCLUSIONS: We provide a detailed description of the methods used to collect, clean, and prepare personal digital device data from one component of a large, longitudinal eating disorder study. The results will identify digital signatures of increased risk for binge and purge events, which may ultimately be used to create digital interventions for BED and BN. Our goal is to contribute to increased transparency in the handling and analysis of personal digital device data. TRIAL REGISTRATION: ClinicalTrials.gov NCT04162574; https://clinicaltrials.gov/ct2/show/NCT04162574. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38294.

Retention, engagement, and binge-eating outcomes: Evaluating feasibility of the Binge-Eating Genetics Initiative study.

OBJECTIVE: Using preliminary data from the Binge-Eating Genetics Initiative (BEGIN), we evaluated the feasibility of delivering an eating disorder digital app, Recovery Record, through smartphone and wearable technology for individuals with binge-type eating disorders. METHODS: Participants (n = 170; 96% female) between 18 and 45 years old with lived experience of binge-eating disorder or bulimia nervosa and current binge-eating episodes were recruited through the Recovery Record app. They were randomized into a Watch (first-generation Apple Watch + iPhone) or iPhone group; they engaged with the app over 30 days and completed baseline and endpoint surveys. Retention, engagement, and associations between severity of illness and engagement were evaluated. RESULTS: Significantly more participants in the Watch group completed the study (p = .045); this group had greater engagement than the iPhone group (p's < .05; pseudo-R2 McFadden effect size = .01-.34). Overall, binge-eating episodes, reported for the previous 28 days, were significantly reduced from baseline (mean = 12.3) to endpoint (mean = 6.4): most participants in the Watch (60%) and iPhone (66%) groups reported reduced binge-eating episodes from baseline to endpoint. There were no significant group differences across measures of binge eating. In the Watch group, participants with fewer episodes of binge eating at baseline were more engaged (p's < .05; pseudo-R2 McFadden  = .01-.02). Engagement did not significantly predict binge eating at endpoint nor change in binge-eating episodes from baseline to endpoint for both the Watch and iPhone groups. DISCUSSION: Using wearable technology alongside iPhones to deliver an eating disorder app may improve study completion and app engagement compared with using iPhones alone.

Eating-disorder psychopathology and driven exercise change models: A latent change score analysis.

OBJECTIVE: Approximately 50% of people with eating disorders (EDs) engage in driven exercise to influence their weight or shape and/or to compensate for loss-of-control eating. When present, driven exercise is associated with a lower quality-of-life, longer hospital stays, and faster rates-of-relapse. Despite the seriousness of driven exercise, most treatments for EDs do not target maladaptive exercise behaviors directly. Given the large proportion of patients with an ED who engage in driven exercise and its effect on treatment outcomes, it is critical to understand what predicts change in driven exercise. The purpose of this study was to test whether ED symptoms prospectively predicted change in driven exercise and vice versa. METHOD: Participants were Recovery Record (RR) users (N = 4,568; 86.8% female) seeking treatment for an ED. Participants completed the Eating Pathology Symptoms Inventory (EPSI) monthly for 3 months. RESULTS: In the full sample, dynamic bivariate latent change score analyses indicated that high levels of dietary restraint and restricting prospectively predicted reductions in driven exercise. Among persons with anorexia nervosa (AN), high levels of binge eating predicted increased driven exercise. Among persons with bulimia nervosa (BN), high levels of body dissatisfaction predicted increased driven exercise. Among persons with binge-eating disorder (BED), high levels of binge eating, purging, and restricting predicted reductions in driven exercise. DISCUSSION: Results highlight changes that may predict increased or decreased driven exercise relative to other ED symptoms for AN, BN, and BED groups. These preliminary findings could inform future research on ED treatment efforts to manage driven exercise.

Longitudinal trajectories of behavior change in a national sample of patients seeking eating-disorder treatment.

OBJECTIVE: Rapid response to treatment, indicated by substantial decreases in eating-disorder (ED) symptoms within the first 4-6 weeks of treatment, is the most reliable predictor of treatment outcomes for EDs. However, there is limited research evaluating short-term longitudinal trajectories of ED symptoms during treatment. Thus, it is difficult to know which aspects of ED psychopathology are slow or fast to change. The purpose of this study was to elucidate three-month trajectories of ED psychopathology during treatment and test whether ED diagnosis influenced the direction and rate of change. METHOD: Participants were Recovery Record users seeking treatment for an ED (N = 4,568; 86.8% female). Participants completed the Eating Pathology Symptoms Inventory once per month for 3 months. RESULTS: Latent growth curve models indicated that ED diagnosis influenced the rate of ED behavior change. Anorexia nervosa was associated with faster reductions in cognitive restraint, excessive exercise, restricting, yet slower reductions in body dissatisfaction, and binge eating. Bulimia nervosa was associated with faster reductions in binge eating, cognitive restraint, excessive exercise, and purging. Binge-eating disorder was associated with faster reductions in body dissatisfaction and binge eating, yet slower reductions in restricting. CONCLUSIONS: Our results have implications for future research by providing initial information about the direction and rate of ED change over the course of treatment. If clinicians and researchers know which ED symptoms are slow to change, on average, across diagnostic groups, treatment protocols could be adjusted to target slow changing symptoms more quickly, and therefore improve ED treatment outcomes.