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 ).
Keywords: Binge Eating Genetics Initiative (BEGIN); Binge-eating disorder; Bulimia nervosa; Diversity; Health inequality; Level of care; Treatment access; Treatment gap; Treatment-seeking.
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.
© 2023. The Author(s).