Where do we go from here? A futurescape of the care of eating disorders

By Eric F. van Furth, PhD, FAED, Netherlands

The Problem
Both the US and the Dutch healthcare system are rated among the best in the world. However, both mental healthcare systems are systematically flawed. In the US healthcare system, patients with psychiatric disorders and patients with physical illnesses are not treated equally (lack of parity). Health insurance coverage for psychiatric treatment is minimal and the availability of treatment for eating disorders is limited.

I live and work in the Netherlands, a country a little larger than Maryland but smaller than West Virginia, with a population of 17 million (2.5 million less than New York state or Florida). The Netherlands has an excellent infrastructure and is densely populated (just exceeding that of New Jersey). The Dutch Academy for Eating Disorders has 22 specialized eating disorder treatment centers as members and about 150 individual professional members. These centers offer outpatient and day treatment and most have beds for inpatient or residential treatment. All treatments for adults are reimbursed by health insurance companies. Yet, the Dutch mental healthcare system (a so called universal healthcare system) is also flawed. For example, most recently, the responsibility for the care for children under the age of 18 years was transferred from the health insurance companies to the 390 Dutch municipalities. Essentially transferring a medical benefit to a municipal service! This transition was accompanied by a 30% budget cut. The idea behind the transition is to provide better (and cheaper) local and integrated care for children and teens with problems. Yet for psychiatric disorders with a low prevalence, like eating disorders, the new systems provides many challenges. To overcome these two Dutch centers were contracted to provide treatment for children with eating disorders on a national level.

Overall, in the Netherlands, the demand for treatment far exceeds the availability, resulting in waiting lists. There is pressure from insurance companies and municipalities to downsize the number of residential treatment beds and to decrease the overall duration (=cost) of treatment. At the same time, the number of patients seeking mental health care has increased by 10% annually. The growth in healthcare expenditure in the Netherlands triples that of the overall growth in the economy. At this pace, by 2030, one in five Dutch workers need to be employed in health care—an impossibility.

According to the NEDA website, 30 million individuals suffer from a clinically significant eating disorder at some time in their life. The AED site states that, “currently, about one in 20 young women in the community has an eating disorder”. This translates to 1.5 million young women (10 – 25 years) in the US! Our Dutch language e-community Proud2Bme.nl attracted 2 million unique visitors in 2015. Our healthcare systems would be totally overwhelmed if all individuals with an eating disorder were to seek treatment! However, we know that most individuals with an eating disorder in the community never receive treatment. Stigma, shame, denial of the nature and/or severity of the illness, and the above mentioned system related barriers all contribute to postponing help seeking or for those who do seek help, denial of access to care. We also know that early detection is helpful because a shorter duration of illness before treatment predicts a better outcome. We know we need to decrease drop out from treatment and relapse following treatment. Providing evidence-based treatments with better long-term outcome than those offered currently is essential.

However, we will never be able to provide adequate evidence based treatment for all individuals in the community with an eating disorder. Not in the US, not in the Netherlands, nor elsewhere. We simply do not have the number of qualified professionals, the infrastructure, or the financial resources to do so. From a societal perspective, our service delivery system should be effective and efficient, on both a clinical and an economic level. The Dutch challenge is to provide appropriate care for more individuals with eating disorders with decreasing financial resources. Appropriate care refers to a level of care or interventions that are congruent with the nature and severity of the disorder and are the result of the negotiating process between patient and clinician.

Currently, we lack the knowledge to predict, at first assessment, who will recover without treatment within, say 3 years and who, at the other end of the spectrum, has a high probability of developing a chronic disorder. The etiology of eating disorders is incompletely understood as are factors that maintain the disorders. The time of precision medicine, where we can tailor our interventions to an individual’s biology and psychology, lies in the distant future.

The Solution
So what can we do to meet this challenge? As mentioned above, we must become better at providing outpatient treatment that leads to sustained recovery. This requires more treatment efficacy and (cost) effectiveness research, training of professionals in evidence based treatment, and continuity of care during the recovery process for the affected individual, partner, and family. Obviously, this can only be provided for those who have successfully gotten over the hurdles of seeking and accessing mental healthcare. And as hopefully demonstrated above, this represents the minority of those suffering from an eating disorder in the community.

To meet our challenge of affordable, accessible, effective, and appropriate care for many, we need to radically change our service delivery model. The model I propose hinges on sharing, empowerment, and technology. In this age of virtual communication so many virtual communities have been created. In the Netherlands, Proud2Bme.nl has demonstrated the power of (anonymous) e-communities and the influence of virtual social support. Nonetheless, there are also many live state and national networks too. A crucial next step is to connect the various real and virtual networks, to support their empowerment, and to provide individuals and groups with the right IT tools.

If we truly want to advance our mission, we need work together, share information and networks and multiply knowledge and power. Connecting existing virtual and live networks of various organizations to provide knowledge, support, and a voice to individuals with an eating disorder is an essential step. I envision a virtual platform that connects organizations, e-communities, and individuals. The platform’s main aim would be to empower the individual by providing her or him with a choice of appropriate recovery tools and the opportunity to engage in virtual (tele-medicine, e-health) or live peer and professional support. Key enhancers of empowerment are the provision of a sense of belonging, a purpose (recovery), security, respect, acceptance, and access to tools. I would like to see individuals connect in virtual or local live groups and take charge of their recovery process by using modern apps, peer counseling, and/or hiring the services of a qualified professional. Virtual or live groups could start anywhere: the school, the gym, college, church, the neighborhood or online, even internationally.

You might think this idea is too much out of the box or even crazy. And yes, there are many issues to overcome to bring this idea to fruition, like stigma, the low perceived self-efficacy in many individuals with an eating disorder, and funding, to name a few. However, the advantages may be great both on an individual and a societal level. Prevention and early detection are natural allies of the groups involved with this process. The use of peer support and recovery apps may prove to be effective for many in the early stages of developing an eating disorder, thus avoiding the need for more formal treatment which is more difficult to access and more costly. It is my hope that in the long run this model will provide more rapid and lasting recovery for many in the early stages of the disorder, thus leaving the limited resources for more intense treatment available for those with more severe eating disorders.

Call to Action
In this new service delivery model empowerment and modern technology bolster each other. Please let me know what you think (eric@vanfurth.nl)! How can we make this work? Are there best practices or local experiments that we can learn from? What are the next steps we can take? Who wants to help?

About Professor van Furth
Eric van Furth, Ph.D., FAED is Clinical Director at Rivierduinen, a large mental health organization in the Netherlands. He is responsible for the Center for Eating Disorders Ursula, the Center for Child and Adolescent Psychiatry, the Center for Autism, and the Center for Psychiatry and Intellectual Disability, and is Professor of Eating Disorders at the department of psychiatry, Leiden University Medical Center (LUMC), the Netherlands. Dr van Furth is a clinical psychologist and psychotherapist. He has been working clinically with patients with eating disorders for more than 30 years. He is currently the president of the Dutch Academy for Eating Disorders and is a Fellow and Past-President of the Academy for Eating Disorders.

Join Professor van Furth in supporting World Eating Disorders Action Day. Be sure to follow along on Twitter @WorldEDDay and hashtag #WeDoAct, #WorldEDActionDay, @WorldEatingDisordersAction on Instagram and World Eating Disorders Action Day on Facebook.