How Do We Reach People Who Can’t Access the Treatment They Need?
By Douglas W. Bunnell, PhD, FAED, CEDS
Eating disorders affect nearly 30 million people in the United States alone. Virtually everything known about the treatment of eating disorders has evolved on the basis of clinical and research experience with a limited subset of that 30 million. Our best available treatments are accessible to an even smaller subset because of limited clinician availability, cost, dissatisfaction with the nature of the available treatments, and pessimism about treatment effectiveness (Kazdin, Fitzsimmons-Craft, & Wilfley, 2017). We, as a field, need to identify treatment interventions that are both effective and accessible to a much wider population of people who struggle with the full range of eating disorders.
Think about what a typical patient with an eating disorder has to manage. The patient, at one end of the treatment continuum, will need to find and pay a psychotherapist or family therapist, and often a physician, nutritionist, and psychiatrist, as well. Our best evidence-supported treatments recommend 20 or more sessions over the course of six to 12 months. If a patient’s eating disorder is more severe, the patient may need more frequent sessions over a longer period of time or may need referrals for higher levels of care, such as partial hospitalization, residential, or inpatient programs, which are even less accessible and considerably more expensive. Higher levels of care are also often tremendously disruptive to a patient’s social, academic, and occupational routines. And, not surprisingly, the limited levels of treatment intensity reflect the needs of providers and payers, not the needs of patients and their carers.
So here is the dilemma: How can we develop and deliver high-quality, evidence-based treatment interventions to a much wider range of people with eating disorders? Might there be ways to provide more flexible, accessible, adaptable, and affordable interventions? Over the past decade, clinical researchers and public health experts have developed a number of low-intensity and community-based programs that utilize trained nonprofessionals to address depression, anxiety, and post-traumatic stress disorder in countries that lack adequate mental health resources (Patel, 2003). The Mental Health Innovation Network, in a 2015 review of innovations in mental health service delivery, noted that low-intensity psychological interventions “refer to interventions that do not rely on specialists and are modified, brief evidence-based therapies including guided self-help or e-mental health. They tend to be transdiagnostic, delivered by paraprofessionals, and have a primary focus on teaching self-management skills to clients” (Carswell, 2015). The relative success of these low-intensity, low-cost programs, and the ease with which they can be scaled up and implemented, has sparked tremendous interest in how to adapt the model to address underaddressed mental health needs in the developed world. How might these programs help address the gaps we see in our eating disorder treatment systems?
One solution to these issues is to focus on the development of lower-intensity treatments that are easily accessible, affordable, and scalable across a wide region. Many, if not most, people needing treatment for their eating disorder are not able to access adequate treatment because our treatments tend to be delivered by individual clinicians in a single office for a limited number of hours. The inconvenience and burden of committing to a full course of treatment can be overwhelming and unavoidably activates and empowers ambivalence. We’ve also seen a consistent and reductionistic consolidation of treatments deemed “evidence-based.” Yet we know that the best available treatments for eating disorders, particularly family-based treatment and enhanced cognitive behavioral therapy, do not lead to full recovery in at least half of the patients who enter treatment. Most of our treatment models continue to struggle with premature termination, and we have a limited understanding of why so many people find so many of our treatments to be unacceptable to them. Guided self-help, telehealth, community or peer support programs, mental health/eating disorder “coaching,” and applications such as Recovery Record all try to address these fundamental challenges in our current treatment delivery models by layering in extra interventions and support that are delivered in less costly ways.
These various interventions have research track records that suggest they can have a significant impact for people with eating disorders. Guided self-help (GSH) is a low-intensity intervention that has shown promise in screening and treating people for a variety of behavioral health issues, including anxiety, depression, and eating disorders (Wagner et al., 2013). Newer iterations of GSH can now be delivered through the internet, either in groups or on an individual basis. While it seems intuitively obvious that GSH might be particularly effective for individuals with less severe symptomatology, there is actually considerable evidence that it may be an effective first-line intervention for more severe clinical presentations (Borgueta, Purvis, & Newman, 2018).
GSH typically involves a standard clinical curriculum that the client uses as a foundation for the intervention. The “guide,” either a trained clinician or a trained paraprofessional, has limited, structured, and brief contact with the client to problem-solve barriers to implementation and adherence. Eating disorder applications of GSH tend to be based on cognitive behavioral therapy (CBT), but newer versions are incorporating components of acceptance and commitment therapy (ACT) and interpersonal psychotherapy (IPT).
GSH, then, is a good example of a “low-intensity” intervention. Using trained paraprofessionals as guides represents “task shifting” by freeing up limited specialist clinician time for higher degrees of clinical complexity (Kazdin et al., 2017). GSH also has the potential to provide basic, evidence-based information, interventions, and clinical support. Most important, it provides a model for access that circumvents a number of the barriers faced by people who have struggled to connect with support and assistance. In a fully elaborated continuum of care, GSH, delivered in person, online, or by smartphone, can open the door to help for large numbers of underserved sufferers. National eating disorder awareness and advocacy organizations have long identified access to care as a key component of their missions, and the larger ones support helplines and referral programs. These programs are potential platforms for providing paraprofessional GSH to at least a substantial subset of individuals seeking assistance.
While GSH shows promise as a formal “low-intensity” intervention, a number of other innovations are also emerging and maturing as options to fill in the gaps in the eating disorder treatment continuum of care. Telehealth/Teletherapy options are now commonplace in behavioral health. Some insurance providers are building their own networks of “virtual” therapists who can provide therapeutic services remotely to people. Removing barriers such as travel and scheduling will certainly improve access to care. These same platforms may be able to provide customized support and coaching to eating disorder clients.
Apps such as Recovery Record allow clinicians and clients to share real-time information on motivation, symptom use, and treatment adherence. Connecting the client and clinician outside of the official session allows for a nuanced and highly personalized refinement of therapeutic challenges and exposures focused not just on the eating disorder thoughts, feelings, and behaviors, but also on other eating disorder maintaining factors such as interpersonal/social behaviors, temperament, and mood variability. In cocreating a therapeutic engagement that exists outside of the specific session time, clinicians and clients can identify risks for relapse and potentially deter readmissions to higher levels of care.
Eating disorders create disconnection not only from the individual’s body and self, but also in their relationships with other people. Peer and community support groups are innovative approaches that limit that disconnection by providing mentorship and connection with people who are sharing a common experience, and by decreasing social isolation. Project HEAL (theprojectheal.org) and Columbia University have partnered to study the potential for what they call Communities of HEALing. Participants have access to either in-person or virtual peer support groups and peer mentors. The early results suggest that a strong majority of participants found that their involvement in the community helped their recovery.
Most eating disorder clinicians are by now well familiar with adjunctive meal coaching. Coaches facilitate and support meal plan adherence and, in coordination with the treatment team or treatment provider, work to identify, implement, and monitor therapeutic challenges around meal rituals, exercise, meal planning, grocery shopping, and even more “downstream” challenges such as clothes shopping. Coaches are also at the front line with the client and provide essential information to the treatment team about motivation, symptom use trends, need for support, and assessment of the need for a higher level of care. Meal coaching has become increasingly professionalized, with a growing number of training institutes providing sophisticated education about evidence-based methods for building and sustaining motivation and commitment to recovery.
Newer adaptations of the coaching models, some of which are derived from experience with other behavioral health and substance abuse issues, seek to extend the ways in which patients engage in the work and challenges identified in their ongoing outpatient or nonresidential treatment programs. Their “scope of practice” has extended into more traditionally psychotherapeutic tasks such as exposure and response prevention, dialectical behavior therapy (DBT) skills, motivational enhancement, and values-based exercises. Kazdin et al. (2017) refer to the concept of “task shifting,” in which paraprofessionals, coaches, or guides can take on some of the therapeutic tasks historically managed by the treatment provider or treatment program. I think this is a leading edge of treatment development, and “coaches,” broadly defined, can be trained to help the treatment provider implement a fuller range of therapeutic exposures beyond the nutritional and eating disorder basics. These might include challenges around social functioning, more general self-care, self-expression, and motivation. With proper supervision and training, coaches can help their clients deepen the connection to treatment and enhance their commitment to full recovery.
Ethical and Regulatory Challenges
Innovations often outpace the development of ethical guidelines and regulations. The overarching goal is to create greater access to high-quality interventions. Lower-intensity interventions such as GSH, coaching, and internet-delivered options should be grounded in best practices. It is also essential that we develop systems to study the effectiveness of these innovations. The use of paraprofessionals poses some specific challenges. What, for instance, is the difference between a “guide,” a “coach,” and a licensed clinician? A GSH guide may work with a client to identify and manage issues that limit adherence to the GSH protocol. What if one of these issues is a lack of family support? This would clearly be a topic in a client’s psychotherapy, but how would a guide/coach address it in the context of GSH or a coaching relationship? Guides and coaches can certainly be trained to use motivational interviewing, but can we imagine having coaches, with or without licensed clinician oversight, using CBT, DBT, ACT, or IPT skills as part of their work with clients? As we work to fill in the lower-intensity levels of the continuum of care, we will need to clarify issues around the scope of practice, supervision, liability, training certifications, and intra-treatment team communications (Borgueta et al., 2018). As these interventions develop, we will also accumulate more information about which clients are likely to benefit from these interventions and which ones are likely to need more conventional higher levels of care and support. These types of interventions have great promise, but we need to develop much more sophistication around the coordination of care, the assessment of risk and clinical appropriateness, the markers of progress, definitions of outcome, and, more generally, the standards of care for each type of intervention.
The eating disorders field has made tremendous progress over the past 20 years. The public is more aware of the seriousness and dangers of these disorders, and we have developed treatments that, while certainly less than perfect, can help many people get on a path of recovery. Despite these improvements, there are enormous gaps in our detection, treatment, and support networks. We still know very little about how and why some people fully recover from their eating disorder and others do not. We continue to rely disproportionately on very intensive and expensive treatments that reach only a fraction of the people who need help. We need to develop lower-intensity interventions such as GSH and similar interventions that are accessible, sophisticated, and thoroughly integrated into a continuum of care that can support people in recovery and minimize their risk of relapse and readmission to intensive levels of care. We do not know yet whether the sorts of innovative treatments reviewed in this article can help people avoid the need for more intensive treatment; that is ultimately an empirical question. And we need to be sure that these innovative programs are ethically sound and well-supervised. But we, as a field, should commit to providing people with eating disorders with the best possible options for recovering in their own communities.
About the author:
Douglas W. Bunnell, PhD, FAED, CEDS, is a clinical psychologist in Westport, Connecticut, and New York City. He specializes in the treatment of people with eating disorders. He is a past board chair of the National Eating Disorders Association and a recipient of its Lifetime Achievement Award. In addition to his private practice, Bunnell has helped to design, develop, and manage partial hospitalization and residential programs in his work with Monte Nido & Affiliates and The Renfrew Center. He is a Fellow of the Academy for Eating Disorders and Certified Eating Disorder Supervisor for the International Association for Eating Disorders Professionals. Bunnell is a co-editor, along with Margo Maine and Beth Hartman McGilley, of Treatment of Eating Disorders: Bridging the Research Practice Gap.
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