Exploring Best Practices in the Treatment of Severe and Enduring Anorexia Nervosa: A Pilot Study
By Melinda Parisi Cummings, Ph.D., CEDS-S and Robbi Alexander, PhD, APN, PMHCNS-BC
A robust literature shows that despite treatment, a sizable group of patients with anorexia nervosa (AN)continue to experience symptoms over a prolonged period. Some will develop a persistent illness that becomes less responsive to treatment (Treasure et al., 2015), with limited recovery and a life-long course (Ciao et al., 2016; Steinhausen, 2002). Approximately 20-25% of those with AN develop this protracted form, increasingly termed severe and enduring AN (SE-AN; Ciao, et al., 2016). While the literature presently lacks a consistent definition of SE-AN, common markers include a long duration of illness (most frequently, seven or more years) and a history of unsuccessful treatment interventions (Broomfield, et al., 2017).
As in those with other chronic illnesses, it is well documented that individuals with SE-AN typically experience diminished quality of life and long-term impairment in several important areas of functioning (Ciao et al., 2016; Arkell & Robinson, 2008) while facing high mortality rates and often feeling burdensome to their family and other loved ones (Westmoreland & Mehler, 2016). In addition, individuals with SE-AN usually have a history of multiple treatment failures, placing them at risk for demoralization and an internalized sense of failure that may be manifested by rejection of additional treatment experiences (Conti et al., 2016), loss of hope (Robinson, et al., 2015), and increased suicidality (Smith et al., 2018). The burden of illness is so high that Westmoreland and Mehler (2016) noted that many patients with SE-AN consider whether a “compassionate death” (p. 313) would be preferable to an ongoing lifetime of serial treatments with little to no time in recovery.
Patients with SE-AN present with complex clinical challenges that are distressing not only to them, but often to the providers who treat them. As patients have frequently experienced multiple courses of treatment with limited sustained benefit, treatment rejection is a common theme. Clinicians who work with this population may experience anxiety, frustration, and even hopelessness when confronted with these realities (Parisi-Cummings & Erckert, 2020), complicating the relationship between patients and treatment providers. There is an urgent need to explore new models of care for this population.
There is increasing understanding that effective treatment of patients with SE-AN may require a different treatment paradigm that better suits their unique needs. For example, Treasure et al. (2015) have proposed a staging model for AN, with different treatment approaches suggested for different stages of illness. Treatment recommendations for those with SE-AN include widening treatment goals to include improvement in quality of life and psychosocial functioning, taking a more collaborative therapeutic stance, and focusing less explicitly on weight gain and symptom remission while maintaining clear safety parameters (Bamford et al., 2015; Touyz et al., 2016; Russell et al., 2019). Strategies that focus on enhancing motivation, reducing harm, identifying goals and instilling hope are thought to be particularly helpful (Touyz, et al., 2016). It is important to note, however, that most of the literature on treatment of SE-AN is conceptual rather than empirical. Outcome studies of high methodological quality are limited, with only one randomized-controlled study with this population (Touyz et al., 2016). Treatment recommendations generally remain theoretical rather than empirically supported (Kotilahti et al., 2020), and additional research in this area is vital.
In response to calls for a treatment approach more tailored to this population, we have developed an inpatient treatment protocol that addresses core components of treatment discussed in the SE-AN literature. The protocol espouses a harm reduction model (e.g., Russell et al., 2019), promoting improvement in medical and psychological safety, avoidance of further negative consequences of illness (including additional failure experiences), and improvement in quality of life, even though patients may remain at a weight that is below that of their ideal. Treatment includes an explicit focus on enhancing adaptive functioning and social adjustment, collaborative (vs. prescriptive) goal setting around weight gain, and an appreciation for the lived experience of those with SE-AN. Our aim is that a more collaborative therapeutic stance will result in increased motivation, treatment retention, hope, and long-term engagement that may ultimately result in improved weight restoration and symptom reduction over the long haul.
A pilot study is presently underway to evaluate the protocol. Patients will be eligible to participate in the study if they meet criteria for SE-AN as evidenced by
- lack of sustained recovery despite receiving appropriate treatment (i.e., consistent with current practice guidelines; Yager, 2007)
- severe impairment in multiple areas of functioning (Bamford & Mountford, 2012)
- long-term maintenance of a malnourished state (Steinglass & Foerde, 2016)
- low expressed motivation for full recovery (Bamford & Mountford, 2012), and
- illness duration of at least seven years post-adulthood. Potential participants must therefore be at least age 25.
The last criterion was identified as an additional safeguard to ensure that patients without a significantly enduring course of illness were excluded and would therefore receive a traditional, full recovery-oriented treatment. Patients with SE-AN as defined above who receive recovery-oriented treatment-as-usual will be compared to patients with SE-AN receiving treatment under the new protocol at discharge and short-term follow-up (three and six months) intervals. Outcome measures include treatment retention, BMI, eating disorder symptoms, motivation, social adjustment, quality of life, and hope. In addition, each participating patient is interviewed to gather qualitative data about the lived experience of SE-AN and their response to treatment over the course of their illness. Lastly, in recognition of the need to partner with other clinicians to provide a continuum of care, providers from the eating disorder treatment community (physicians, therapists, and dietitians) were (and continue to be) invited to offer their perspectives on best practices for the treatment of SE-AN. It is our hope that information gained from the study of patients with SE-AN and the providers who treat them will add to the body of knowledge about how best to provide care and improve the quality of life for those with SE-AN.
If you are interested in learning more about the study or participating in a provider focus group around these issues, please contact Robbi Alexander at firstname.lastname@example.org.
About the authors:
Melinda Parisi Cummings, Ph.D., CEDS-S:
A licensed psychologist with over 20 years of eating disorders expertise, Dr. Parisi Cummings is currently an Assistant Professor at Holy Family University. Prior to her faculty appointment, she served for fifteen years as Program Director of the Princeton Center for Eating Disorders Care at Penn Medicine Princeton Medical Center. She remains a consultant to the program and is an affiliate member of the Penn Medicine Princeton medical staff. She has written and presented extensively on eating disorders, including their impact on families and ethical issues in providing care, and maintains a part-time psychotherapy, supervision, and consultation practice.
Graduate Counseling Psychology, Holy Family University
One Campus Drive
Newtown, PA 18940
New Jersey Licensed Psychologist
Pennsylvania Licensed Psychologist
Robbi Alexander, Ph.D., APN, PMHCNS-BC:
Dr. Alexander is a registered nurse whose entire career has been spent in psychiatric/mental health nursing, with 13 years devoted to the treatment of those with eating disorders. She is currently Director of the Princeton Center for Eating Disorders, Administrative Director of Psychiatry at Penn Medicine Princeton Health and an affiliate member of the Penn Medicine Princeton medical staff. Dr. Alexander is affiliated nursing faculty at the University of Delaware and graduate student preceptor for nurse practitioner students of University of Pennsylvania Nursing. Her research interests include nursing workforce diversity and best practices for treatment of those with eating disorders.
Director, Princeton Center for Eating Disorders, Administrative Director of Psychiatry
Penn Medicine Princeton Health
1 Plainsboro Rd.
Plainsboro, NJ 08536
Licensed RN/APN/CNS in NJ, PA, DE, MD
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