Treatment of Patients With Anorexia Nervosa in the US—A Crisis in Care | Psychiatry and Behavioral Health | JAMA Psychiatry | JAMA Network
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February 24, 2021

Treatment of Patients With Anorexia Nervosa in the US—A Crisis in Care

Author Affiliations
  • 1Department of Psychiatry, University of California, San Diego, San Diego
  • 2Department of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill
  • 3Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden
JAMA Psychiatry. 2021;78(6):591-592. doi:10.1001/jamapsychiatry.2020.4796

The United States is facing a crisis in the treatment of anorexia nervosa (AN)—a debilitating, expensive, and frequently fatal illness. Annually, eating disorders cost the US more than $65 billion.1 Despite scientific advances, treatments do not yet exist that target the core biology of AN. Moreover, the absence of standards of care has left a vacuum to be filled by programs offering untested interventions. Many academic medical center programs have dwindled or closed, functionally steering insured patients and families to private programs and limiting treatment access for the uninsured and underinsured. Herein, we describe the crisis and propose solutions.

Anorexia nervosa frequently requires prolonged hospitalization for weight restoration and medical and psychiatric stabilization.2 Relapse rates approach 50%, and the standardized mortality ratio is approximately 6,3 rendering it one of the most lethal of psychiatric disorders. Although empirically supported treatments in youth, such as family-based treatment, have moderate success, recovery is often prolonged, and the evidence base for treatment in adults is weak.4 Approximately 20% of patients with AN develop a severe and protracted illness. No US Food and Drug Administration–approved medications exist.2

How the Crisis of Care Has Grown

Few Treatments

As mentioned previously, evidence-based treatments for AN that are based on biology do not yet exist. Recent innovations in genetic and biobehavioral research elucidate neurobiological contributions to AN disease risk and chronicity but have yet to be translated into clinical interventions. In part, this lack of evidence-based treatment reflects gross underfunding of AN research relative to its disability-adjusted life-years.5

Loss of Academic Programs

During the past decade, eating disorders programs housed in academic medical centers have been closing or shrinking because of their inability to compete with the proliferation of freestanding treatment centers.6 Their demise compromises the ability of medical school curricula to address eating disorders adequately and limits formative experiences that equip trainees from all health care professions with the skills necessary to detect and treat eating disorders across the health care system. Fewer emerging clinicians may be prepared to care for these patients, and more lives could be lost. The restricted recruitment pipeline for physician-scientists may further perpetuate the dearth of quality translational research.

Lack of Standards of Care

Binding standards of care for AN do not exist. Treatment of eating disorders is unregulated. In the absence of consensus on optimal treatment of the disease, many untested but superficially appealing treatments are marketed direct to consumer and direct to clinician. Outcome data are rarely published. Marketing strategies are unconstrained by legislation and policy changes that limit the pharmaceutical industry.6 Fee-for-service approaches dominate, with value-based care a rarity.7 High health care use and high recurring costs reflect the price paid for the absence of evidence-based treatments and standards of care.

Insurance Coverage and Reimbursement

Patients with AN who have severe and enduring presentations and the uninsured or underinsured are at a life-threatening disadvantage. Clinicians and facilities with expertise in caring for individuals with severe and enduring AN are lacking, as is reimbursement for their care.8 Medicaid coverage for eating disorders is highly variable, and Medicare does not cover medical nutrition therapy, a central pillar of eating disorders treatment. Private programs often reject patients with high acuity or inadequate insurance; therefore, individuals in greatest need can no longer access care. Repeated treatment failures, insurance denials leading to premature discharge, revolving-door experiences, and clinician burnout potentially contribute to a worrying pattern of opting for palliative care or hospice for the chronically ill. This pattern may reflect a failure to translate science into successful interventions and barriers to developing and disseminating innovative treatments focused on disease management and improving quality of life.

How Can We Address the Crisis of Care?

Translation of Research Into Effective Therapeutics

A lack of a mechanistic understanding of AN has thwarted efforts to develop evidence-based interventions. Advancing knowledge of genetic and neurobiological mechanisms could offer insight into perplexing behaviors associated with AN, thereby informing more treatments for restrictive eating, driven physical activity, distorted body image, and anosognosia (ie, the inability to recognize the seriousness of the illness).

Treatment of AN is unique in that it requires nutritional rehabilitation and weight gain, necessitating innovative research designs beyond standard outpatient randomized clinical trials. Guidance on treatment staging based on illness severity is lacking. Large multisite studies are essential to achieve adequate sample sizes. In addition, interventions that address both the psychological and biological aspects of the illness; incorporate short-, medium-, and long-term outcomes; address adherence, dropout, and relapse prevention; and aim for a varied intervention toolbox are needed, with the understanding that a one-size-fits-all approach to AN cannot adequately address the needs of patients and families.

Early Detection and Referral

Individuals with AN are typically symptomatic for years before seeking treatment. This delay in treatment must change; early evidence-based intervention has been shown to yield better outcomes.9 Accordingly, training is needed for physicians on the front lines of detection (eg, pediatricians, family medicine physicians) as well as teachers, coaches, and parents, underscoring the critical need for academic eating disorder programs. Effective screening, brief intervention, and referral guidelines are important components of care and under development by the US National Center of Excellence for Eating Disorders (nceedus.org).

Development of Obligatory Standards of Care

Although guidelines for treatment implementation exist,10 they have not resulted in mandated standards of care that deliver evidence-based interventions. We believe that standards of care must be developed and adhered to for reimbursement by third-party payors. These standards need to address the types of evidence-based treatments delivered, the training required to deliver such treatments, and mandate a standardized data repository to monitor outcomes.

Serve the Underserved and Bolster Academic Programs

To stop neglecting the most vulnerable patients, improvement in access to care for patients with chronic, severe eating disorders and for those with public insurance is needed. The loss of academic programs has rendered treatment for AN a luxury commodity. Hospital-based programs are needed to treat patients with high medical and psychiatric acuity and are often the only ones that accept public insurance.

In addition, support for academic centers of excellence that combine research aimed at improving clinical care with training in evidence-based approaches could reinvigorate the field.

Proposed Changes in Care Models

With the goal of providing value-based health care, what is the best method for delivering treatment for AN? Successful eating disorder treatment necessitates integrated multidisciplinary care across development and levels of care and considers patients and their families. Establishment of clinical centers of excellence could define and consolidate delivery of standard care and build consumer trust. Coronavirus disease 2019 has accelerated innovation in mental health care delivery—especially the provision of mental health telemedicine services. Virtual therapy and incorporation of wearable technology could extend the work of physicians and allied professionals and deliver interventions in real time. Easing requirements for cross-state licensure could enable virtual follow-up by a known specialized treatment team.

Funding

Compared with other psychiatric disorders, AN receives relatively little funding in the US,1 which may explain slow treatment development and dissemination. The estimated financial value of medical research for eating disorders in 2018 and 2019 was $49.8 million ($9 per person with an eating disorder), compared with $239 per individual with Alzheimer disease, $109 per individual with autism, and $69 per individual with schizophrenia.

The closing of academic programs may further limit opportunities to engage and train the next generation of clinical researchers. An Academy for Eating Disorder Task Force that inspired this perspective seeks to engage stakeholders, including federal funding agencies, philanthropic organizations, patients and families, advocates, insurance companies, policy makers, and clinicians, to coordinate dialogue to set priorities for the field. We encourage an immediate engagement of these stakeholders to address this crisis in care.

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Article Information

Corresponding Author: Walter H. Kaye, MD, Department of Psychiatry, University of California, San Diego, 4510 Executive Dr, Ste 315, San Diego, CA 92121-3021 (wkaye@health.ucsd.edu).

Published Online: February 24, 2021. doi:10.1001/jamapsychiatry.2020.4796

Conflict of Interest Disclosures: Dr Kaye reported serving on the advisory board of EDCare and serving as an advisor to the Neuroscience-Based Mental Health Assessment and Prediction (NeuroMAP)–Center of Biomedical Research Excellence (CoBRE) at the Laureate Institute for Brain Research (University of Tulsa and University of Oklahoma). Dr Bulik reported receiving grants from Shire (now Takeda Pharmaceutical Company Limited) and the Lundbeck Foundation; honoraria from Idorsia; and royalties from Pearson; and serving on a scientific advisory board for Shire.

Additional Information: The content of this Viewpoint reflects deliberations of a task force convened in 2018 by the Academy for Eating Disorders, composed of these senior and emerging clinicians and researchers in the field: Walter H. Kaye, Cynthia M. Bulik, Stephen Wonderlich, Evelyn Attia, Carrie McAdams, Kathleen Pike, Christine Peat, Tracy Richmond, James Lock, Jennifer Wildes, Angela Guarda, Sara Forman, Rebecka Peebles, Daniel LeGrange, Guido K. Frank, and Elissa Myers.

References
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Deloitte Access Economics. Social and economic cost of eating disorders in the United States of America: report for the Strategic Training Initiative for the Prevention of Eating Disorders and the Academy for Eating Disorders. Published June 2020. Accessed January 19, 2021. https://cdn1.sph.harvard.edu/wp-content/uploads/sites/1267/2020/07/Social-Economic-Cost-of-Eating-Disorders-in-US.pdf.
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Mitchell  JE, Peterson  CB.  Anorexia nervosa.   N Engl J Med. 2020;382(14):1343-1351. doi:10.1056/NEJMcp1803175 PubMedGoogle ScholarCrossref
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Fichter  MM, Quadflieg  N.  Mortality in eating disorders—results of a large prospective clinical longitudinal study.   Int J Eat Disord. 2016;49(4):391-401. doi:10.1002/eat.22501 PubMedGoogle ScholarCrossref
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Bulik  CM, Berkman  ND, Brownley  KA, Sedway  JA, Lohr  KN.  Anorexia nervosa treatment: a systematic review of randomized controlled trials.   Int J Eat Disord. 2007;40(4):310-320. doi:10.1002/eat.20367 PubMedGoogle ScholarCrossref
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Dennis  K, Newton  D, Mohta  NS. Addressing the lack of continuity of care in mental health services. NEJM Catalyst. July 18, 2019. Accessed November 17, 2020. https://catalyst.nejm.org/doi/full/10.1056/CAT.19.0638
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    3 Comments for this article
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    Enigmatic enigma
    Paul Nelson, MS, MD | Family Health Care, P.C. retired
    Of the "Human Suffering" Health Conditions encountered during a 41 years career as a Primary Physician, anorexia nervosa is probably the least likely to benefit from a treatment strategy based on maintaining a person's autonomy with beneficence. Preserving survival almost always involves some degree of forced institutionalization. From my own experience, I would view it as a 2-4 person mortality incidence per Primary Physician life-time career. Not mentioned by the authors, what is the mortality trend during the last 30 years?
    CONFLICT OF INTEREST: None Reported
    A European view on the crisis of care for anorexia nervosa
    Katrin Giel, PhD | Medical University Hospital Tübingen
    We thank Kaye and Bulik for this important viewpoint which draws the attention to the significant challenges which we are facing in providing better treatments for our patients with anorexia nervosa.
    We believe that this viewpoint is of high importance by outlining the urgent need for action in the field, and importantly, this applies also to health care systems and countries outside the US. A recent review shows that the burden of anorexia nervosa is strikingly high worldwide, with a mortality risk five times higher for those who have received inpatient care and yearly health care costs nearly 50% above
    those in the general population (van Hoeken & Hoek, 2020). Therefore, we would like to add a perspective from a European country with a different health care system:
    In Germany, we do have a well-established nationwide network of academic treatment centers specialized for the care of patients with anorexia nervosa in inpatient, day-patient and partly also outpatient settings, and we do have a health care system reimbursing for intensive and costly inpatient care. There is also a German treatment guideline for eating disorders available which is regularly updated (Resmark et al., 2019). These are generally good starting points allowing us to provide high quality care for anorexia nervosa as well as teaching students and future mental health care providers. However, despite this, we are facing many challenges similar to those outlined by the viewpoint which hinder us to make the most of this infrastructure for our patients: First of all, we fully agree that much more mechanism and translational research efforts are needed to improve treatment outcome in anorexia nervosa (Glashouwer et al., 2020), however, also in Europe, we face the problem of insufficient funding for research on eating disorders (Schmidt et al., 2016). Fifteen years ago, the German Ministry for Science and Education funded EDNET, a nationwide research network on eating disorders, a successful joint program providing novel evidence on treatments for adolescent and adult patients with anorexia nervosa (Fichter et al., 2012; Herpertz-Dahlmann et al., 2014; Zipfel et al., 2014) which has by now also influenced international treatment guidelines. However, this funding was discontinued, inevitably resulting also in some degree of discontinuity of high-quality efficacy research which requires high effort and commitment and therefore first of all a reliable funding.
    Beyond this point, our health care system also poses several challenges to implement care pathways which best meet patients’ needs, e.g. a separation of providers offering inpatient versus outpatient or child and adolescent versus adult care, fostering early relapse. Moreover, we fully agree with Kaye and Bulik, that early detection and uptake of care is pivotal to improve the prognosis of anorexia nervosa. Despite a comparably good insurance coverage and access to care, we by far do not reach all those who need help, for instance due to experienced stigma, waiting times and limited access to specialized care, especially in rural areas.
    In a nutshell, we fully agree with Kaye and Bulik on their viewpoint of a crisis in care for anorexia nervosa and would like to join also from a German perspective their call in the direction of key stakeholders in the field, including federal funding agencies, to tackle this problem together.

    The board of the German Society for Eating Disorders:
    Timo Brockmeyer, Stefan Ehrlich, Katrin Giel, Astrid Müller & Martin Teufel
    CONFLICT OF INTEREST: None Reported
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    Unknown etiology of Anorexia Nervosa
    Sebastian Salim, MD Psychoanalyst | Professor at Faculty of Medicine - Universidade Federal de Minas Gerais
    Undoubtedly the pointed difficulties for Anorexia Nervosa treatment is due to its unknown etiology.
    Through my interdisciplinary studies between Neurosciences, Psychiatry, Psychoanalysis, Experimental Psychology, Genetic and other sciences, I propose that Anorexia Nervosa etiology is related to a phylogenetic defense to survive, triggered in human fetus or during the birth by a trauma as conceptualized in DSM-IV. The patient maintains attached to this defense, establishing the predisposition for traumatic stress disorder.
    It happens a biological regression. The basal metabolism reduces the use and consume of oxygen of cellular function to a minimum with the add of residual organism hydrogen
    sulfide (H²S). This defense is pointed by Blackstone and others (1992) as responsible for the animals and plants hibernation state, named by them as a suspended animation state of life. It is the defense to survive that brings the individual to an insufficiency for familiar, social, affect and professional life.
    The treatment must consider this reference by the patient itself through psychoanalytic therapy. Must also involve the family and the multidisciplinary health caretakers.
    I published these studies in 2019 in the book 'The body as a Psychoanalysis subject'.
    CONFLICT OF INTEREST: None Reported
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