Translational Science Benefits
Eating disorders affect 10% of the population.1 Among eating disorders, restrictive eating disorders like anorexia nervosa and atypical anorexia nervosa are particularly harmful. These disorders are characterized by significant weight loss and/or low body weight relative to their prior growth trajectory, an intense fear of gaining weight, and a distorted perception of one’s body weight or shape, with the difference being that those with atypical anorexia nervosa are technically considered to be “normal” weight, while those with anorexia nervosa are technically considered to be “underweight.” People with anorexia nervosa have one of the highest death rates across psychiatric disorders2 five to six times higher than the general population due to suicide and medical complications.3,4 Early detection and treatment are critical to prevent chronic anorexia and reduce risk of death. Twenty percent of teens with anorexia nervosa have to be hospitalized, and within one year, about half are hospitalized again.5 Family-based treatment is the leading outpatient behavioral treatment for teens with restrictive eating disorders, and it is particularly cost-effective because it reduces the need for hospitalization by more than half.6 However, only 20% of people with eating disorders receive treatment,7 and many fewer receive evidence-based treatments like family-based treatment. Low treatment utilization is worsened by underdiagnosis and poor access to treatment, particularly for people from underserved groups and those who have public insurance.8
One of the main gaps in care is limited availability of providers who provide family-based treatment, particularly those who provide care to those with public insurance.8 To date, little work has been done to understand the best ways to train mental health providers in family-based treatment. Standard trainings in family-based treatment assume a relatively high degree of knowledge about eating disorders, as well as significant experience and comfort assessing and treating teens with eating disorders. Further, trainings are generally attended by providers in private practice whose work may not require as much attention to challenges related to socioeconomic and systemic factors, cultural factors, or diverse settings. Dr. Erin Accurso and her research team are invested in addressing this gap in care for young people with restrictive eating disorders. Key team members include Drs. Joseph Guydish and John Landsverk (implementation science), Dr. Barr Taylor (digital mental health and online interventions), and Dr. Ross Crosby (biostatistics). The purpose of this cluster randomized trial is to compare training methods in family-based treatment for behavioral health providers serving youth insured by Medicaid with eating disorders. Twenty-five publicly-funded agencies across six counties in California were randomized to receive either a live two-day training or a self-paced online training in family-based treatment, both of which incorporated information and adaptations relevant to diverse populations and publicly-funded settings. Following training completion, participants were able to opt-in to receive ongoing consultation with an expert in family-based treatment given the importance of addressing individual-level and systemic barriers post-training for successful implementation. Interested participants were then randomized to receive either 1 year of expert consultation or 6 months of expert consultation followed by 6 months of supported peer consultation.
Despite the fact that Medicaid pays for most mental health treatment in the US, very little research has sought to improve publicly-funded care for eating disorders. Access to evidence-based care for eating disorders is especially poor for youth insured by Medicaid, leading to high rates of hospitalization. One factor contributing to this gap is that most health care providers, including medical and mental health providers, have poor knowledge about eating disorders and their management. Given high turnover rates and limited financial resources in community-based settings, cost-effective, on-demand, sustainable training methods are needed to avoid complete loss of eating disorders expertise within a couple of years. Knowledge from this study will help to improve care for Medicaid-insured youth with eating disorders, 75% of whom are racial and ethnic minorities. These efforts could ultimately improve eating disorder recovery rates and also inform evidence-based implementation practices for other relatively lower base-rate disorders.
Demonstrated benefits are those that have been observed and are verifiable.
Potential benefits are those logically expected with moderate to high confidence.
Data from healthcare providers implementing family-based treatment in community-based settings will inform clinical guidelines for treating racially and ethnically diverse youth with eating disorders with public insurance. potential.
This project seeks to improve diagnosis and intervention delivered to youth with restrictive eating disorders, including anorexia nervosa and atypical anorexia nervosa. potential.
This effort will increase accessibility of specialized eating disorders services for youth with Medicaid insurance due to an increased number of providers receiving training in family-based treatment. potential.
Provider education about eating disorder treatment will improve the quality of services for youth with eating disorders who are insured by Medicaid. potential.
Provider training may improve the cost effectiveness of services by reducing inpatient hospitalizations. potential.
Early effective treatment of restrictive eating disorders may increase recovery rates and reduce the likelihood that the illness will become chronic. potential.
This research has clinical, community and economic implications. The framework for these implications was derived from the Translational Science Benefits Model created by the Institute of Clinical & Translational Sciences at Washington University in St. Louis.9
Clinical: We expect to be able to learn more how to effectively implement family-based treatment in publicly-funded community-based settings with racially and ethnically diverse youth, building on experiences and lessons gleaned from a diverse group of provider participants who will implement family-based treatment across a variety of settings. Our prior research suggests that certain adaptations are needed for heath providers working with Medicaid-insured youth in publicly-funded settings, and this study will advance our understanding of potential adaptations that may inform the development of clinical guidelines.
Community: This project is targeting improved access to high-quality eating disorders care for racially and ethnically diverse youth who traditionally have poorer access to specialty eating disorder service. Training was inclusive of assessment and diagnosis across eating disorders, as well as treatment principles for youth with restrictive eating disorders, including anorexia nervosa and atypical anorexia nervosa. As a result of improved screening and assessment, this project may increase the number of youth who are identified as having an eating disorder. In addition, training in family-based treatment will increase systems’ capacity to provide evidence-based treatment to those youth who would benefit from these services. Currently, most systems are not offering family-based treatment, or have limited availability for this treatment, with patients experiencing significant waits to access this care. By training and supporting additional providers within these systems, specialized eating disorders services will be more accessible for youth with Medicaid insurance.
Economic: Eating disorders are associated with high treatment costs. When youth receive family-based treatment, costs are significantly reduced because of significantly fewer days spent in the hospital. This training effort has the potential to be cost-effective and result in financial savings for health systems if outpatient care is effective in reducing reliance on inpatient care and other higher level of care programs. These benefits may also inform future policy relating to the financing of eating disorders care.
Partnerships with key stakeholders in each of the participating counties are critical to the potential clinical and community benefits that may arise from this project. Leadership investment to improve care for young people with eating disorders facilitated recruitment and training efforts.
- Schaumberg K, Welch E, Breithaupt L, et al. The Science Behind the Academy for Eating Disorders’ Nine Truths About Eating Disorders. Eur Eat Disord Rev. 2017;25(6):432-450.
- Crow SJ, Peterson CB, Swanson SA, et al. Increased mortality in bulimia nervosa and other eating disorders. Am J Psychiatry. 2009;166(12):1342-1346.
- Himmerich H, Hotopf M, Shetty H, et al. Psychiatric comorbidity as a risk factor for mortality in people with anorexia nervosa. Eur Arch Psychiatry Clin Neurosci. 2019;269:351-359.
- Fichter MM, Quadflieg N. Mortality in eating disorders – results of a large prospective clinical longitudinal study. International Journal of Eating Disorders. 2016;49(4):391-401.
- Steinhausen HC, Grigoroiu-Serbanescu M, Boyadjieva S, Neumärker KJ, Winkler Metzke C. Course and predictors of rehospitalization in adolescent anorexia nervosa in a multisite study. Int J Eat Disord. 2008;41(1):29-36.
- Agras WS, Lock J, Brandt H, et al. Comparison of 2 family therapies for adolescent anorexia nervosa: a randomized parallel trial. JAMA Psychiatry. 2014;71(11):1279-1286.
- Hart LM, Granillo MT, Jorm AF, Paxton SJ. Unmet need for treatment in the eating disorders: a systematic review of eating disorder specific treatment seeking among community cases. Clin Psychol Rev. 2011;31(5):727-735.
- Accurso EC, Buckelew SM, Snowden LR. Youth Insured By Medicaid With Restrictive Eating Disorders-Underrecognized and Underresourced. JAMA Pediatr. 2021;175(10):999-1000.
- Institute of Clinical & Translational Sciences at Washington University in St. Louis. Translational Science Benefits Model website. Published February 1, 2019.