Managing Severe and Enduring Anorexia Nervosa

A Clinician's Guide

Stephen Touyz, Daniel Le Grange, Hubert Lacey, Phillipa Hay, Stephen Touyz, Daniel Le Grange, Hubert Lacey, Phillipa Hay

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317678106
• Edition: 1
• Topic: Psychologie
• Subtopic: Psychopathologie

Based on the only evidence-based randomized controlled trial yet undertaken in patients with severe and enduing anorexia nervosa, Managing Severe and Enduring Anorexia Nervosa uses the results of that trial to present a new paradigm for treatment. Moreover, this informative newtext assembles the leading scientists across three continents to provide a comprehensive overview and new paradigm for treatment and stimulate interest in the development of new psychosocial approaches. Students, clinicians, and researchers in the field of eating disorders will find this edited volume a valuable reference handbook in the clinical management of patients with anorexia nervosa.

1
What Do We Know About Severe and Enduring Anorexia Nervosa?

Anna C. Ciao, Erin C. Accurso, and Stephen A. Wonderlich

The persistence of anorexia nervosa (AN) is well-documented in the literature. Even with psychological or pharmacological treatment, many individuals with AN do not recover (Berkman, Lohr & Bulik, 2007). Approximately 20–25% of patients with AN do not remit over the long term (Berkman, Lohr & Bulik, 2007; Steinhausen, 2002). This subset of individuals with persistent AN is often labeled by providers as “chronic” (i.e., long course of disorder), or alternatively “treatment resistant” or “non-responsive” (i.e., failure to achieve good treatment response). Recent literature describes these patients as having “severe and enduring” anorexia nervosa (SE-AN), based in part on evidence that individuals with SE-AN exhibit long-term impairment in physical, psychological, and social domains that parallels other severe and chronic mental disorders such as schizophrenia (Arkell & Robinson, 2008; Steinhausen, 2002).

Clinicians will likely encounter patients with SE-AN in clinical practice, but little research is available to guide best practices for their treatment. This chapter will synthesize available theoretical and empirical knowledge of SE-AN to highlight current knowledge about this clinical population. Therefore, we will first examine how SE-AN is defined and discussed in the literature. We will then review both the empirical literature and theoretical perspectives on the psychosocial treatment of SE-AN, including a randomized-controlled trial comparing two treatments for SE-AN (Touyz et al., 2013), two case-series studies (Golan, 2013; Williams, Dobney & Geller, 2010), and clinical descriptions of intervention strategies (Goldner, 1989; Hamburg et al., 1989; Robinson, 2009; Strober, 2004; 2009; Vitousek, Watson & Wilson, 1998; Yager, 1992). Our conclusions and recommendations reflect the areas of convergence between empirical data and theoretical perspectives.

Defining SE-AN

Although the body of literature dedicated to treatment for SE-AN has grown in recent years, there is a remarkable lack of consensus about how to best define this population. Given the lack of empirical research to guide classification, SE-AN has been operationalized in several different ways by various research groups and clinicians. Early theoretical perspectives highlighted motivational aspects of AN that could impact a patient’s ability to benefit from treatment, such as “treatment resistance” (Hamberg et al., 1989; Vitousek, Watson & Wilson, 1998) and “treatment refusal” (Goldner, 1989). Others included an additional focus on chronicity, describing patients as “chronic and recalcitrant” (Yager, 1992), “chronic, treatment-resistant” (Strober, 2004; 2009), or as having “longstanding” eating disorders that “have not benefitted from traditional [treatment] approaches” (Williams, Dobney & Geller, 2010, p. 247). Although these definitions are helpful in characterizing the clinical features of SE-AN, they are too broad to objectively identify patients with SE-AN.

Alternative definitions of SE-AN have utilized the duration of the disorder as an objective and specific marker of chronicity, given the negative relationship between duration of the psychopathology and long-term recovery in AN (for example, Fichter, Quadflieg & Hedlund, 2006; Strober, Freeman & Morrell, 1997). For example, a recently completed randomized-controlled trial comparing two treatments for SE-AN only included participants if they had experienced more than seven years of the disorder (Touyz et al., 2013). The authors note that their cut-off was conservatively derived from the upper limit of average illness length reported in previous AN treatment trials. Others offer a broader definition that includes chronicity along with other factors. In his book discussing the clinical management of severe and enduring eating disorders, Robinson (2009) suggests that SE-AN should be defined by both chronicity and clinical severity. Robinson defines chronicity as a duration of illness greater than ten years, based on Steinhausen’s 2002 findings that recovery rates in AN are slower after that time. Robinson’s operational definition for severity is less clear. While severity is described as the point at which symptoms cause significant impairment to quality of life, this construct is not defined or quantified any further. In her case series report on a comprehensive treatment approach for severe and debilitating eating disorders, including SE-AN, Golan (2013) offers another broad definition. In this study, SE-AN is described as a combination of clinical severity (“difficulty in maintaining regular functioning”), treatment failure (“failed to reach sustained improvement with previous ED treatment”), and chronicity. While Golan provides some data regarding this definition (for example, the average illness duration in the SE-AN sample was 5.7 years with a median of 1.5 months of prior hospitalization and 5 months of prior outpatient treatment), no explicit operational cut-offs for these dimensions of SE-AN are offered.

Challenges in Defining SE-AN

While chronicity, severity, and treatment resistance may all be potentially important in a comprehensive definition of SE-AN, the operationalization of these constructs and their relative weight in defining SE-AN remains unclear. A Delphi study highlighted the challenge of reaching consensus about SE-AN (Tierney & Fox, 2009). Fifty-three eating disorder specialists provided feedback on the definition and treatment of “chronic AN.” Although experts agreed that the definition should include “entrenched patterns of behavior,” an “identity intertwined with AN,” and low weight (BMI < 17.5), they were unable to agree on the importance of other markers of severity (impairment in menstrual or social functioning), chronicity (duration of illness), or treatment response (number of failed treatment attempts).

In addition to the lack of expert agreement, there are several practical challenges that complicate the definition of SE-AN. Even if there is agreement on the domains most relevant to SE-AN (for example, severity, chronicity, and treatment resistance), specific operational definitions must be proposed and consistently applied. This represents a difficult task because some of these indicators of possible SE-AN are not clearly defined. For example, duration of illness is frequently examined in relation to AN prognosis or treatment outcome (Treasure, Stein & Maguire, 2014), yet most studies do not report how illness duration is defined and assessed. In our clinical and research experience, illness duration can be measured in a variety of ways, for example, through patient/family-reported diagnosis date, patient/family-reported date of symptom emergence, or date of entry into treatment. In addition, these definitions do not account for periods of recovery (for example, for an individual who developed AN at age 13, responded well to treatment shortly thereafter, and relapsed at age 20, a seven-year duration of AN would not adequately capture the length of her active disorder). The same measurement issues are present for other constructs, such as how to define a treatment failure or success.

Another challenge is the importance of developmental considerations. For instance, the prognosis and response to active treatment for weight regain of a 20-year-old with a 10-year duration of illness and 47-year-old with a 10-year duration of illness might be significantly different, and it may not be appropriate to label both patients as having SE-AN. A final challenge in defining SE-AN is choosing appropriate clinical severity markers, given the clinical heterogeneity of the SE-AN population. If impairment is seen across psychological, social, and physiological domains it is difficult to identify which clinical symptom areas are most critical in characterizing a severe and enduring course. For example, it is possible that a patient has chronic impairments in medical status but is relatively high-functioning in terms of occupational and social roles. Focusing directly on eating disorder-related symptoms is just as complex since patients with AN may improve on one dimension (for example, report little impairment in cognitive domains of the eating disorder) but exhibit severe impairment in another dimension (for example, chronic low BMI of 16.5). Altogether, the complexity of selecting, operationalizing, and assigning a relative weight to each of these constructs has delayed the field in reaching consensus on how to comprehensively and specifically define SE-AN.

It is critical to reach consensus on the important elements that define SE-AN, but it is equally important to clearly operationalize each of its elements. This ambiguity and dearth of knowledge about the SE-AN population have led to calls for research that seeks to identify clinical symptoms that differentiate individuals with SE-AN from more acute cases, as well as examine the prognostic value of specific characteristics (Wonderlich et al., 2012). It is apparent that research about SE-AN will continue to advance slowly without a clear sense of the population of interest. Therefore, we restate the need for additional research to inform the definition of SE-AN.

Treating SE-AN

Evidence Base for the Treatment of SE-AN

While there is agreement that available treatments should be modified to fit the unique needs of an SE-AN population, particularly given the high rates of dropout in AN treatment (DeJong, Broadbent & Schmidt, 2012), there is limited empirical research to guide these recommendations. Indeed, the evidence base for SE-AN treatment is quite limited. Nevertheless, several recent case-series studies and one randomized-controlled trial provide preliminary data on the potential benefit of specific psychological approaches.

The Community Outreach Partnership Program (COPP); Williams, Dobney, & Geller, 2010

This case-series report describes a team-based approach for SE-AN and other chronic eating disorders, which includes hospital and community-based services. COPP diminished the importance of reducing or eliminating eating disorder symptoms as treatment goals and instead focused on increasing quality of life by promoting autonomy, increasing hope, and improving psychosocial skills. Outcomes were examined for 31 patients (15 with an AN diagnosis; M age = 31.1 years, M duration of illness = 15.2 years) who participated in the program for approximately two years (M duration = 25.6 months, range: 4 to 53 months). Results indicated that COPP participants experienced significant improvements in global distress, hopelessness, body mass index, and eating disorder symptoms. There were no significant changes in quality of life, which was surprising given that this was the primary target of this program.

Integrative approach; Golan, 2013

This case-series report describes a collaborative treatment approach for SE-AN and other severe and enduring eating disorders, which includes mental health, nutritional, and medical services. Treatment is provided within a developmental framework of recovery using a traditional cognitive-behavioral approach enhanced with narrative therapy and motivational interviewing techniques. Treatment is focused on increasing patient empowerment and achieving collaboratively determined goals. Areas other than the eating disorder are emphasized, such as social skills training and increasing leisure activities. A large number of patients with SE-AN (N = 258; defined as severely ill patients with an illness duration of 6–7 years who had failed to reach sustained improvement with previous eating disorder treatment) were treated in this program with low dropout (8% dropout within the first two months of treatment). Treatment ranged from 15 months to 4 years. At the end of treatment, 69% of those with AN were fully recovered (defined as 12 months of being within 15% of ideal body weight, regular menstruation, no purging behavior, normal eating habits, and good social adjustment) or much improved (defined as having full occupational and social functioning and infrequent eating disorder symptoms). At 4-year follow-up, 68% of those with AN were fully recovered or much improved.

Cognitive Behavioral Therapy (CBT-AN) and Specialist Supportive Clinical Management (SSCM); Touyz et al., 2013

The sole randomized-controlled study within an SE-AN population compared the relative efficacy of CBT-AN to SSCM for 63 adults (M age = 33.4 years, M illness duration = 16.6 years). CBT-AN (adapted for SE-AN from Pike et al., 2003) and SSCM (adapted for SE-AN from McIntosh et al., 2006) differed in style and structure; CBT-AN targeted the key behavior and cognitions of AN, whereas SSCM was more psychoeducationally-focused and supportive. Both treatments were delivered from a harm reduction perspective, not mandating weight gain and instead focusing on improving quality of life. Retention in the study was excellent (87.3% completed treatment, 71.4% completed 6-month follow-up, and 79.4% completed 12-month follow-up). Patients received 30 individual outpatient treatment sessions over eight months. All treatment goals were collaboratively determined by the patient and therapist. At the end of treatment, no treatment differences were found in quality of life, mood disorder symptoms, and social adjustment (primary outcomes) or in weight, eating disorder pathology, motivation for change, and health care burden (secondary outcomes). At 6-month follow-up, participants treated with CBT-AN had greater social adjustment than those treated with SSCM, and at 12-month follow-up the CBT-AN group had lower eating disorder pathology and greater readiness for recovery relative to SSCM.

Areas of Consensus in SE-AN Treatment Approaches

The evidence base described can be combined with several clinical perspectives (Goldner, 1989; Hamberg et al., 1989; Strober, 2004; 2009; Robinson, 2009; Vitousek, Watson & Wilson, 1998; Yager, 1992) and associated recommendations for addressing chronicity, severity, and treatment resistance in SE-AN.

Put Together a Team

There is agreement among perspectives that the multidisciplinary team is fundamental for providing support and stability in the treatment of SE-AN. Team members include the mental health professional, who may also serve as the care coordinator or as primary psychotherapist (Robinson, 2009; Strober; 2004; 2009; Williams, Dobney & Geller, 2010), a physician to monitor medical stability, and a psychiatrist and dietician as needed. Regular communication among team members is mandatory and regular team meetings are encouraged, as well as specific consultation when difficult situations arise (Hamberg et al., 1989; Yager, 1992). There is also a clear emphasis in such team-oriented perspectives to avoid punitive interventions (Goldner, 1989), and to support team members and avoid countertransference problems (Hamberg et al., 1989; Strober, 2004; 2009). Many experts also recommend family involvement in the treatment team (Goldner, 1989; Hamberg et al., 1989; Robinson, 2009). Family members may collaborate on the treatment plan and benefit from specific support services while caring for the patient (Golan, 2013; Robinson, 2009; Strober, 2004; 2009). It may also be necessary to expand the multidisciplinary team at crisis points (Hamberg et al., 1989) or to deliver novel interventions (Yager, 1992). Golan (2013) also describes the use of “clinical mentors” for patients needing increased emotional and functional support.

Move the Goalposts

There is also agreement among approaches that traditional goals in eating disorders treatment are not suitable for patients with SE-AN. Approaching treatment from a traditional framework is likely to increase treatment dropout, and therefore therapists must adjust their expectations at the outset of treatment. Therapeutic goals should be collaboratively determined based on achievable, realistic changes (Strober, 2004; 2009; Yager, 1992). Therapists should directly acknowledge and address any discrepancies between therapist and patient treatment goals (Strober, 2004; 2009). Yager (1992) discusses the common clinical tension between passivity (i.e., setting goals too low) and aggression (i.e., setting goals too high), encouraging clinicians to be self-aware and monitor their reactions as they negotiate goals. Although goals are tailored to fit each patient’s specific needs, homeostasis is not endorsed; change in one or more areas should be encouraged (Vitousek, Watson & Wilson, 1998; Yager, 1992), with the understanding that readiness for change may depend on stage of recovery (Golan, 2013).

Perhaps the largest goal shift relative to traditional eating disorder treatment is the recommendation to minimize the importance of weight gain in an SE-AN population (Hamberg et al., 1989; Strober, 2004; 2009; Touyz et al., 2013). Vitousek and colleagues offer a slightly different perspective, stating that weight gain should remain a primary goal and that treatment should encourage small steps toward that goal (Vitousek, Watson & Wilson, 1998). Lowered expectations for weight gain are often discussed within a harm reduction model (Strober, 2004; 2009; Williams, Dobney & Geller, 2010), with the inten...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• List of contributors
• Foreword
• Preface
• 1 What Do We Know About Severe and Enduring Anorexia Nervosa?
• 2 Quality of Life and Psychosocial Functioning in Severe and Enduring Anorexia Nervosa
• 3 Perpetuating Factors in Severe and Enduring Anorexia Nervosa
• 4 How Does Anorexia Nervosa Become Resistant to Change?
• 5 Treating Severe and Enduring Anorexia Nervosa: A Randomized Controlled Trial
• 6 Managing the Patient with Severe and Enduring Anorexia Nervosa
• 7 Specialist Supportive Clinical Management for Severe and Enduring Anorexia Nervosa: A Clinician’s Manual
• 8 Cognitive Behavioral Therapy for Severe and Enduring Anorexia Nervosa
• 9 Administering Treatments for Severe and Enduring Anorexia Nervosa: Examples from Treatment Experiences
• 10 Who is Best Placed to Treat Clients with Severe and Enduring Anorexia Nervosa?
• 11 Hospital Admissions in Severe and Enduring Anorexia Nervosa: When to Admit, When Not to Admit, and When to Stop Admitting
• 12 Is Involuntary (Compulsory) Treatment Ever Justified in Patients with Severe and Enduring Anorexia Nervosa? An International Perspective
• 13 Severe and Enduring Anorexia Nervosa: A New Approach to its Diagnosis, Features, and Treatment
• 14 The Role of Palliative Care in Severe and Enduring Anorexia Nervosa
• 15 Treating Males with Severe and Enduring Anorexia Nervosa: Different to Females?
• 16 Pharmacotherapy and Novel Biological Approaches in Severe and Enduring Anorexia Nervosa: Helpful or Harmful?
• 17 A Life Wasted: The Patient Perspective
• Index