Editor’s Note: This post is part of a series to explore how we can utilize research, clinical experience, and policy levers to prevent and enhance treatment of eating disorders in children and teens at a time when behavioral health concerns, including eating disorders, in youth are demanding attention and resources.
Eating disorders affect more than 28 million Americans and are one of the most lethal psychiatric disorders. Adolescents are among the most at-risk for eating disorders, which is of particular concern given the associated long-term health effects. Youth with eating disorders often experience significant health concerns including but not limited to cardiac arrhythmia, cognitive impairment, osteoporosis, infertility, and most seriously, death.
Research indicates that fewer than 20% of those with an eating disorder receive appropriate treatment.
Inappropriate referrals that do not align with the most evidence-based recommendations for adolescents struggling with an eating disorder due to inadequate training for health professionals
Delays in treatment seeking due to lack of public knowledge and awareness about eating disorder early warning signs
Inadequate coverage of evidence-based eating disorder treatment by private and public insurers
Delayed diagnosis and limited access to care are strong predictors of poor prognosis for individuals with eating disorders, making it crucial that more providers and policymakers understand the evidence-based treatments for these deadly diagnoses and how they can play a role in increasing access.
Current evidence shows a gap in health care providers’ understanding of treatment guidelines and access to treatment.
More than 75% of family providers report having patients with an eating disorder whom they felt unsure of how to treat, and fewer than half of medical trainees correctly identified Family Based Treatment as the most effective treatment for adolescents with anorexia nervosa.
These numbers are concerning as health care providers are often the key to mobilizing, empowering, and guiding families in the initial stages of identifying and treating an eating disorder. It is crucial for these trusted providers to assure families that eating disorders do not have to be a lifelong illness and can be effectively treated on an outpatient basis.
So, what do pediatricians and policymakers need to know in order to improve outcomes for teens with eating disorders?
Family Based Treatment is effective at treating teens with eating disorders
Family Based Treatment is a manualized treatment (meaning the key interventions of the treatment are clearly laid out and are designed to be delivered in a certain order) and is considered the gold standard intervention for adolescents with eating disorders. Research shows that approximately 50% of adolescents who receive Family Based Treatment reach full remission, with another significant portion reaching partial remission.
The treatment includes three phases:
In Phase 1, parents take over all eating-related decisions for their teen, with the number one goal being weight restoration. Once eating disorder behaviors have been reduced, Phase 2 is introduced. Parents gradually transfer responsibility over food consumption back to the adolescent (in a developmentally appropriate fashion and according to family norms). Once an adolescent is fully weight-restored, is no longer restricting their dietary intake, and can eat and exercise in a flexible manner, Phase 3 focuses on helping the patient re-establish healthy relationships with family members, address typical adolescent issues, and prevent relapse.
Given the medical complications among adolescents with eating disorders, a multidisciplinary team is an essential part of treatment. A Family Based Treatment therapist delivers treatment and a patient’s primary care team supports treatment using Family Based Treatment-informed care. Traditional Family Based Treatment involves weekly sessions for the entirety of Phase 1 and allows sessions to eventually be spaced out to bi-weekly and then monthly as families transition into Phases 2 and 3. Individual treatment for any co-occurring conditions typically does not happen until after Phase 3 has been reached.
The majority of research on Family Based Treatment has been on its effectiveness in treating anorexia nervosa. However, it has also been used to treat bulimia nervosa and avoidant/restrictive food intake disorder. We continue to build a body of evidence supporting the effectiveness of this treatment method.
Eating disorders need more attention from providers
Eating disorders are a growing public health threat. Since the onset of the COVID-19 pandemic, rates of eating disorders have risen as much as 15%, demanding even more attention. It’s critical that eating disorders are treated with the severity and gravity that they require.
Primary care providers have a unique ability to mobilize families to address their teen's eating disorder and to bolster treatment adherence through their longstanding relationships with families. It’s crucial that they are able to discuss these concerns with families, screen for and diagnose eating disorders, and facilitate evidence-based treatment for adolescents. To provide this necessary care, additional clinical and medical training, including an overview of the basics of eating disorder diagnosis and treatment, is a top priority for equipping providers with the knowledge to carry this out.
Providers also need to have access to resources and referral bases to share with their patients; however, the demand for Family Based Treatment often exceeds the available resources.
Policymakers can increase access to care
Aside from a limited number of certified treatment providers and geographic variability in treatment availability, health insurance often may not pay for Family Based Treatment or may limit the number of days of treatment.
Opportunities to improve access and coverage include:
Covering both in-person and virtual Family Based Treatment services
Ensuring parity in access to Family Based Treatment as outlined in the proposed revisions to the Mental Health Parity and Addiction Equity Act.
Policymakers must look to research and evidence-based guidance for treating adolescents with eating disorders when creating policy and making related budget decisions.
Eating disorders are treatable and recovery is possible
Prevention and early recognition of eating disorders are crucial to improving outcomes and can contribute to substantial public health improvements. For youth who do experience an eating disorder, increasing awareness and availability of Family Based Treatment could significantly reduce mortality rates and prevalence of more chronic forms of eating disorders, potentially decreasing health care costs as well as saving lives.