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.

Associations Between Attention Deficit Hyperactivity Disorder Symptom Dimensions and Disordered Eating Symptoms in Adolescence: A Population-Based Twin Study.

Although bivariate associations between attention-deficit/hyperactivity disorder (ADHD) and eating disorders in adolescent girls and boys have been previously identified, the mechanistic link underlying the symptom-level associations remains unclear. We evaluated shared genetic and environmental influences on ADHD symptoms and disordered eating in 819 female and 756 male twins from the Swedish TCHAD cohort using bivariate models. Common additive genetic and unique environmental effects accounted for majority of ADHD and disordered eating associations in a differential manner. For girls, the strongest genetic correlation was observed for cognitive/inattention problems-bulimia (0.54), with genetic factors accounting for 67% of the phenotypic correlation. For boys, the strongest genetic correlations were observed for conduct problems-bulimia and hyperactivity-bulimia (~ 0.54), accounting for 83% and 95% of the phenotypic correlation, respectively. As per our findings, the risk of comorbidity and shared genetics highlights the need for preventative measures and specialized treatment for ADHD and disordered eating in both sexes.

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.

Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies.

We present innovative research practices in psychiatric genetic studies to ensure representation of individuals from diverse ancestry, sex assigned at birth, gender identity, age, body shape and size, and socioeconomic backgrounds. Due to histories of inappropriate and harmful practices against marginalized groups in both psychiatry and genetics, people of certain identities may be hesitant to participate in research studies. Yet their participation is essential to ensure diverse representation, as it is incorrect to assume that the same genetic and environmental factors influence the risk for various psychiatric disorders across all demographic groups. We present approaches developed as part of the Eating Disorders Genetics Initiative (EDGI), a study that required tailored approaches to recruit diverse populations across many countries. Considerations include research priorities and design, recruitment and study branding, transparency, and community investment and ownership. Ensuring representation in participants is costly and funders need to provide adequate support to achieve diversity in recruitment in prime awards, not just as supplemental afterthoughts. The need for diverse samples in genetic studies is critical to minimize the risk of perpetuating health disparities in psychiatry and other health research. Although the EDGI strategies were designed specifically to attract and enroll individuals with eating disorders, our approach is broadly applicable across psychiatry and other fields.