Severe And Enduring Anorexia Nervosa Research Articles

Applying Integrated Enhanced Cognitive Behaviour Therapy (I-CBTE) to Severe and Longstanding Eating Disorders (SEED) Paper 1: I am no longer a SEED patient

This autobiographical paper recounts the recovery journey of Lorna Collins, a survivor of severe and enduring anorexia nervosa (SE-AN). Her story begins with a traumatic brain injury at the age of 18, leading to a complex eating disorder that persisted for over two decades. Despite over 30 hospital admissions and various treatment modalities, her condition only worsened, compounded by other mental health challenges. The paper describes these multifaceted struggles, including mistreatment in healthcare, self-harm, further trauma and near-fatal illness. The author aims to culminate her story in an uplifting manner, by highlighting the pivotal role that integrated cognitive behaviour therapy, artistic expression, and a renewed connection with her family have made on her recovery. Collins’ account is not only a personal testimony but also offers critical insights into the shortcomings of traditional eating disorder treatments and the importance of personalised, holistic approaches in mental health care. Lorna’s story aims to bring hope, challenge the concept of SEED and form part of a growing evidence-base that recovery is possible irrespective of duration or eating disorder severity.

Anorexia nervosa through the lens of a severe and enduring experience: 'lost in a big world'.

Severe and enduring anorexia nervosa (SE-AN), is a serious and persistent illness, despite 'state of the art' treatment. Criteria have been theoretically proposed, but not tested, and may not adequately capture illness complexity, which potentially inhibits treatment refinements. The clinical reality of death as an outcome for some people who experience SE-AN (1 in 20) and broadening access to voluntary assisted dying, further complicates the field, which is undeveloped regarding more fundamental concepts such as nosology, treatment, recovery definitions and alternative conceptualisations of SE-AN. The present paper is in response to this and aims to build upon qualitative literature to enhance phenomenological understandings of fatal SE-AN. A published book, being the legacy of a 32-year-old professional artist offers a rich account of a life lived with AN, for 18years with continuous treatment. A polysemous narrative via the interrelationship between the languages of the artist's words and visual art is translated via interpretative phenomenological analysis (IPA), offering rich insight into the SE-AN experience. The process of analysis induced three superordinate themes (1) Disappearing Self (2) Dialectical Dilemma (3) Death and Dying: Finding Meaning. Two cross cutting themes traversed these themes: (a) Colour and (b) Shifting Hope, where the former produced a visual representation via the 'SE-AN Kaleidoscope'. Collectively the themes produce a concept of SE-AN, grounded in the data and depicted visually through the artist's paintings. The picture of SE-AN revealed in the analysis extends upon conceptualisations of SE-AN, highlighting key processes which are thus far under explored. These factors are implicated in illness persistence eliciting opportunities for further research testing including diagnostic considerations and treatment directions. In SE-AN, distorted body image extends to a global distortion in the perception of self. Additional criteria for the severe and enduring stages of illness related to (1) self and identity processes (2) measures of 'global impoverishment' across life domains are proposed for consideration in the future testing of putative defining features of SE-AN.

Severe-Enduring Anorexia Nervosa (SE-AN): a case series

BackgroundAnorexia Nervosa (AN) poses significant therapeutic challenges, especially in cases meeting the criteria for Severe and Enduring Anorexia Nervosa (SE-AN). This subset of AN is associated with severe medical complications, frequent use of services, and the highest mortality rate among psychiatric disorders.Case presentationIn the present case series, 14 patients were selected from those currently or previously taken care of at the Eating Disorders Outpatients Unit of the Maggiore Hospital in Bologna between January 2012 and May 2023. This case series focuses on the effects of the disease, the treatment compliance, and the description of those variables that could help understand the great complexity of the disorder.ConclusionThis case series highlights the relevant issue of resistance to treatment, as well as medical and psychological complications that mark the life course of SE-AN patients. The chronicity of these disorders is determined by the overlapping of the disorder's ego-syntonic nature, the health system's difficulty in recognizing the problem in its early stages, and the presence of occupational and social impairment.

"Ordinary days would be extraordinary": The lived experiences of severe and enduring anorexia nervosa.

Approximately 25% of individuals with anorexia nervosa (AN) experience a chronic form of the disorder, referred to as severe and enduring anorexia nervosa (SE-AN). Although the classification of SE-AN remains preliminary, there have been increasing calls for a harm reduction-based, collaborative treatment model for these patients. To provide such care for patients with SE-AN, it is critical to listen to and learn from their lived experiences. Patients (N = 17) admitted to an inpatient eating disorders program who met initial criteria for SE-AN completed semi-structured interviews about the course of their illness and prior treatment episodes. Interviews were audio recorded and transcribed. Data were analyzed using an inductive, reflexive approach to thematic analysis that examined common themes within and across interviews. Three themes were identified focused on (1) the all-encompassing nature of SE-AN, (2) treatment experiences, and (3) living with chronic illness. Within these themes, there were subthemes. Overall, individuals noted clear insight about their condition, both negative and positive experiences with previous treatment, and hope for better quality of life despite their illness. Individuals with SE-AN describe their illness as a chronic condition and hope for a harm reduction-based treatment. Future work, including the lived experiences of individuals with SE-AN, is important to build our understanding of the classification and clinical characteristics of SE-AN and to develop treatment approaches that may best serve these individuals. Many people with anorexia nervosa do not achieve a full recovery despite repeated treatment episodes throughout their lifespan. Understanding the lived experiences of individuals with SE-AN may help to inform future treatment development efforts that could improve eating disorder and quality of life outcomes for these patients.

Clinical and Ethical Dilemmas in the Involuntary Treatment of Anorexia Nervosa.

After completing this activity, practitioners will be better able to:• Discuss the growing body literature emphasizing moderation and harm-reduction in patients with severe and enduring anorexia nervosa (SE-AN)• Outline and discuss the legal, ethical, and medical challenges inpatient providers face when treating patients with SE-AN. Patients with severe and enduring anorexia nervosa (SE-AN) present numerous clinical and ethical challenges for the hospital psychiatrist. Patients typically come to the hospital in a state of severe medical compromise. Common difficulties in the period of acute medical stabilization include assessment of decision-making capacity and the right to decline treatment, as well as legally complex decisions pertaining to administering artificial nutrition over the patient's objection. Following acute medical stabilization, the psychiatric consultant must decide whether psychiatric hospitalization for continued treatment is indicated, and if so, whether involuntary hospitalization is indicated. The standard of care in these situations is unclear. Pragmatic issues such as lack of appropriate facilities for specialized treatment are common. If involuntary hospitalization is not approved or not pursued, there may be difficulty in determining whether, when, and how to involve palliative care consultants to guide further management. These cases are complex and largely reside in a medico-legal and ethical gray area. This article discusses the difficulties associated with these cases and supports a growing body of literature emphasizing moderation and harm-reduction in patients with SE-AN. Physician-assisted dying (PAD) is also discussed.

Mental Capacity, Decision-Making and Emotion Dysregulation in Severe Enduring Anorexia Nervosa.

Severe and Enduring Anorexia Nervosa (SE-AN) is a chronic eating disorder characterized by long-term starvation and its physical and psychological sequelae, and severe loss of quality of life. Interactions between neurobiological changes caused by starvation, vulnerability (personality) traits, and eating behaviors play a role. Several other factors, such as increased fear and decreased social cognition, have also been found in relation to SE-AN. With this in mind, we aim to add to the understanding of SE-AN by introducing the concept of mental capacity (MC), which refers to the ability to understand and process information—both on a cognitive and an emotional level—and then make a well-informed choice. MC may be an important construct within the context of SE-AN. Furthermore, we will argue how impaired decision-making processes may underlie, fuel, or contribute to limited MC in SE-AN. We will speculate on the importance of dysfunctional emotion processing and anxiety-related processes (e.g., a high intolerance of uncertainty) and their potential interaction with decision-making. Lastly, we will propose how these aspects, which to our knowledge have previously received little attention, may advise research and treatment or help in dealing with the “want but cannot” situation of life-threatening AN.

Discharge Body Mass Index, Not Illness Chronicity, Predicts 6-Month Weight Outcome in Patients Hospitalized With Anorexia Nervosa.

Proposed treatments for severe and enduring anorexia nervosa (SE-AN) focus on quality of life, and psychological and social functioning. By de-emphasizing weight restoration as a priority, however, premature diagnosis of SE-AN may reduce potential for recovery. The present study assessed the effect of weight restoration, illness duration, and severity on treatment outcome 6 months after discharge from an intensive, meal-based behavioral treatment program. Participants included hospitalized adult women (N = 191) with AN or underweight other specified feeding and eating disorder (OSFED). Participants were characterized as short-term (ill <7 years; n = 74) or long-term ill (ill ≥ 7 years; n = 117). Compared with short-term ill, long-term ill patients were older, had lower lifetime body mass index (BMI), more prior admissions, and exhibited greater depression and neuroticism. Long-term vs. short-term ill patients gained weight at the same rate (~2 kg/wk) and were equally likely to be weight restored by discharge (>75% reached BMI ≥ 19 kg/m2 in both groups). At 6-month follow-up (n = 99), both groups had equivalent self-reported BMI, and depression, drive for thinness, body dissatisfaction, and bulimia scores. The only predictor of BMI ≥ 19 kg/m2 at follow-up was discharge BMI. The likelihood of a BMI ≥ 19 kg/m2 at follow-up was 5-fold higher for those with discharge BMI ≥ 19 kg/m2. Few studies of long-term ill inpatients with AN have examined the impact of full weight restoration on short-term outcomes. This study supports the therapeutically optimistic stance that, regardless of illness duration, hospitalized patients with AN benefit from gaining weight to a BMI ≥ 19 kg/m2.

Group family psychotherapy during relapse. Case report of a novel intervention for severe and enduring anorexia nervosa

Background. Anorexia nervosa is a complex and highly variable disorder. Preventing patients from becoming resistant to treatments is fundamental since an important percentage develops a severe and enduring disorder; and because relapse is highly associated with psychiatric comorbidity, poor prognosis, and serious medical consequences due to malnutrition. Contemporary treatments for anorexia nervosa support the benefits of involving the family in treatment, and although the gold standard of family psychotherapy offers an excellent option for anorexia nervosa, that intervention is aimed at early stages, and therapeutic options for later stages of the disorder are reduced and not clearly established. Objective. Expose the therapeutic effect of the protocol for severe and enduring cases of anorexia nervosa at relapse, used at the Clinic of Eating Behavior of the National Institute of Psychiatry, Ramón de la Fuente Muñiz, whose theoretical foundation is systemic therapy. Method. To develop this case report, we carried out an in-depth review of the clinical records, and of the clinic attendance records of the case presented here. CARE clinical case report guidelines format were used. Results. The case shows how a young woman, diagnosed with anorexia nervosa with clinical signs of severe and enduring anorexia nervosa (SE-AN), was able to achieve symptomatic remission after her parents, but not her, were administered the protocol for SE-AN. Discussion and conclusion. Here we present an emblematic case showing the importance of getting the parents involved in the treatment of anorexia nervosa.

Inpatients with severe-enduring anorexia nervosa: Understanding the "enduringness" specifier.

Despite the need for a common definition of severe and enduring anorexia nervosa (SE-AN) with the overarching goal to optimize treatments, this definition still is being debated. Therefore, in this study we conducted an in-depth investigation of the history of AN and its clinical outcomes on inpatients with AN to ascertain the eventual "profiles" for individuals with varying durations of the illness (DOI). We recruited 169 inpatients with AN, grouping them according to DOI: <3years (short duration, SD-AN); 3-6.99years (medium duration, MD-AN); and ≥7years (long duration, LD-AN). We then performed a self-report and interview-based investigation of AN history, clinical data, eating, and general psychopathology, including personality, premorbid traits, stage of change, and quality of life. We measured the clinical outcomes for hospitalization as well. The majority of the measures did not differ across groups. Those with LD-AN were older and diagnosed mostly with the binge-purging AN subtype, failed more previous AN-related treatments, reported a lower lifetime body mass index, and trended toward a younger age at onset when compared to the other groups. All patients responded equally well to hospitalization, but patients with SD-AN improved less in drive for thinness and body-related concerns. We did not find the "enduringness" of AN to be a specifier of severity. Hospitalization was effective for those with LD-AN and MD-AN, while interventions for the core cognitive aspects of over-evaluation of body shape should be offered to patients with SD-AN.

The Ethical Defensibility of Harm Reduction and Eating Disorders

Eating disorders are mental illnesses that can have a significant and persistent physical impact, especially for those who are not treated early in their disease trajectory. Although many persons with eating disorders may make a full recovery, some may not; this is especially the case when it comes to persons with severe and enduring anorexia nervosa (SEAN), namely, those who have had anorexia for between 6 and 12 years or more. Given that persons with SEAN are less likely to make a full recovery, a different treatment philosophy might be ethically warranted. One potential yet scarcely considered way to treat persons with SEAN is that of a harm reduction approach. A harm reduction philosophy is deemed widely defensible in certain contexts (e.g. in the substance use and addictions domain), and in this paper we argue that it may be similarly ethically defensible for treating persons with SEAN in some circumstances.

Achieving Recovery Through Resilience: Insights From Adults in Midlife Living With Anorexia Nervosa.

Despite the high percentage of adults living with anorexia nervosa (AN) over the life course, there is limited understanding of what it means to be living with AN in midlife when the majority of research has focused on adolescents and young adults. As such, clinical practice for individuals in midlife is informed by a severe and enduring AN (SE-AN) framework, which assumes that recovery is not necessarily feasible past young adulthood. This study used constructivist grounded theory methodology to understand the experiences of adults in midlife living with AN. In-depth analyses of 19 participant narratives in midlife show that individuals face barriers to seeking help or remaining in recovery; however, midlife can also act as a significant catalyst toward recovery. Subsequently, there is merit in revisiting the utility of the SE-AN framework in the context of life course theory and exploring resilience-informed approaches in supporting recovery from AN.

Don't shortchange a long illness: A commentary on Severe and Enduring Anorexia Nervosa.

Wonderlich et al.'s manuscript "Severe and Enduring Anorexia Nervosa: Update and Observations about the Current Clinical Reality" reviews Severe and Enduring Anorexia Nervosa (SE-AN) from several perspectives, hoping to stimulate discussion among clinicians, researchers, and other stakeholders about needed next steps for furthering the science relevant to the severe and enduring form of illness that affects a subgroup of individuals with AN. Among the important reasons for a new discussion of SE-AN is that health care has evolved in ways that have reduced comprehensive services for those who are more seriously affected. It is critical that adults with SE-AN be examined empirically to help identify effective strategies for clinical management and that health care policies assure parity for this seriously affected group.

Severe and enduring anorexia nervosa: Fertile ground for iatrogenic development.

Care providers and individuals with severe and enduring anorexia nervosa (SE-AN) are weathering a perfect storm in which the sickest patients receive the least evidence-based treatment and iatrogenic factors play a significant role. Examining access to treatment from an ethical perspective is one strategy for developing more objective protocols related to the care of individuals with SE-AN.

Serious and enduring anorexia nervosa from a developmental point of view: How to detect potential risks at an early stage and prevent chronic illness?

This commentary on serious and enduring anorexia nervosa adopts the position of a developmental psychiatrist. It argues that this perspective illuminates the etiology and course of severe and enduring anorexia nervosa (SE-AN) and could thus help to develop treatments targeting typical early characteristics of patients with SE-AN. Based on a detailed knowledge of contributing factors, a risk score for SE-AN should be designed by which the probability of chronicity could be calculated at an early stage and preventive measures be taken. As the formation of habits seems to play an important role in establishing a chronic course of AN, psychotherapeutic techniques that include "habit reversal" should be considered during the early stage. Another recommended step in preventing SE-AN is the identification of resilience factors that are associated with a late favorable outcome.

Embodiment as a Paradigm for Understanding and Treating SE-AN: Locating the Self in Culture.

There has been a growing call for sociologically engaged research to better understand the complex processes underpinning Severe and Enduring Anorexia Nervosa (SE-AN). Based on a qualitative study with women in Adelaide, South Australia who were reluctant to seek help for their disordered eating practices, this paper draws on anthropological concepts of embodiment to examine how SE-AN is experienced as culturally grounded. We argue that experiences of SE-AN are culturally informed, and in turn, inform bodily perception and practice in the world. Over time, everyday rituals and routines became part of participants’ habitus’, experienced as taken-for-granted practices that structured life-worlds. Here, culture and self are not separate, but intimately entangled in and through embodiment. Approaching SE-AN through a paradigm of embodiment has important implications for therapeutic models that attempt to move anorexia nervosa away from the body and separate it from the self in order to achieve recovery. Separating experiences—literally disembodying anorexia nervosa—was described by participants as more than the loss of an identity; it would dismantle their sense of being-in-the-world. Understanding how SE-AN is itself a structure that structures every aspect of daily life, helps us to understand the fear of living differently, and the safety that embodied routines bring. We conclude by asking what therapeutic treatment might look like if we took embodiment as one orientation to SE-AN, and focused on quality of life and harm minimization.

Moving from “I know it when I see it” to an empirical classification of severe and enduring anorexia nervosa: Commentary on Wonderlich et al. (2020)

Severe and enduring anorexia nervosa (SE-AN) is well known to clinicians who treat eating disorders, especially in adults, yet an empirically validated definition of SE-AN is lacking. Current approaches to delineating SE-AN rely on expert opinion, and there is little consensus regarding the criteria that distinguish SE-AN from other clinical presentations or the thresholds that define the boundaries of severity and enduringness. Empirical classification techniques and clinical staging frameworks that incorporate biomarkers offer intriguing alternatives to expert consensus in refining the definition of SE-AN. Empirical approaches, such as latent class analysis and taxometric analysis, have contributed to advances in eating disorders classification, including support for distinctions between eating disorder classes. Likewise, clinical staging models are being applied to other psychiatric disorders and offer a framework for incorporating biological indices of illness progression, such as neurocognitive changes, into a definition of SE-AN. Though some of these methods (e.g., biomarkers) are a long way from being realized, the need for an evidence-based approach to classifying SE-AN is clear. Without it, the challenges outlined by Wonderlich et al. (International Journal of Eating Disorders, 2020) will be difficult to resolve, and the burden of SE-AN on patients, their loved ones, and the healthcare system will continue.

Severe and enduring anorexia nervosa: No easy solutions

There is currently no evidence-based definition of severe and enduring anorexia nervosa (SE-AN) with which to reliably inform clinical practice and research. Indeed, data on the effect of AN severity and duration on treatment outcome are inconsistent. A large group of patients with SE-AN are repeatedly unsuccessfully managed with the available eating disorders treatments and have no access to adequate treatment for their illness. Cognitive behavioral therapy (CBT) adapted for SE-AN has been designed to enhance quality of life and reduce harm rather than promoting weight gain in such patients, and has had some success. However, a percentage of patients with SE-AN achieves remission, or at least returns to a normal weight range, with available evidence-based treatments for eating disorders, such as enhanced CBT (CBT-E). It would therefore be worth conducting a large-scale randomized controlled trial comparing CBT adapted for SE-AN with CBT-E to assess their relative acceptability; efficacy, including their effect on quality of life and medical stability; cost-effectiveness; and the treatment response moderators that might allow better matching of patients with SE-AN to a treatment oriented either to harm reduction or to change.

Managing Patients With Severe and Enduring Anorexia Nervosa: When Is Enough, Enough?

Approximately 20% of patients with anorexia nervosa develop severe and enduring anorexia nervosa (SE-AN), manifest by decades-long illnesses. At certain points, demoralized and/or based on judicious appraisals of the seeming futility of further professional treatment to radically alter their course, some SE-AN patients decide that "enough is enough" and opt out of intensive treatment. This article considers courses and treatment options available at these stages for patients, families, and clinicians. The author uses clinical illustrations, Socratic questioning, and available literature to explore questions of treatment strategies with patients struggling with SE-AN. SE-AN patients have frequently received care in varieties of medical, psychiatric, and specialized eating disorders inpatient, residential, partial hospital, and outpatient treatment settings. Patients may reject further high-intensity treatment for judicious or capricious reasons, but may still accept lower intensity treatments. Some may reject any and all offers of treatment. Clinicians' treatment recommendations, not always coinciding with patients' wishes, are influenced by numbers of clinical, social, and professional pressures, including those from families, treatment settings, regulatory bodies, and payors. When managing patients with decades-long disease and multiple comorbidities, clinicians must be realistic about the low odds of effecting cure and adjust treatment expectations accordingly. For patients with SE-AN, a variety of low-intensity treatment approaches, at times extending to palliative and hospice care, may be useful. Clinicians should always strive to provide humane comfort and support, as closely aligned to patients' judicious wishes as realistically possible.

Psychological Treatments for People With Severe and Enduring Anorexia Nervosa: A Mini Review.

This Mini-Review presents recent research into evidence for psychological treatments for people with severe and enduring anorexia nervosa (SEAN). Two psychological therapies, specialist supportive clinical management (SSCM), and cognitive behavior therapy for anorexia nervosa (CBT-AN) have limited (one randomized controlled study) evidence of efficacy. Both have had adaptations for SEAN, notably with revision of the primary treatment goal of improved quality of life and full weight recovery a secondary goal. A major issue with existing studies is poor definition of SEAN, and the large deficit in research that has used an agreed definition of SEAN. In particular, it may be problematic to extrapolate from studies of people with either severe and/or enduring but not intractable or “resistant” illness. People with longstanding AN who have not received evidence based care should be offered this with an expectation of recovery. Similarly, people with SEAN may be offered care with judicious mitigation of expectations. In the future, trials should include people with SEAN clearly defined. Trials with a subsample of participants likely to have SEAN, if identified at randomisation, are an opportunity for secondary analyses of such participants. This would widen the evidence base for psychological treatments providing hope for people with this devastating illness. Finally, there is an urgent need not only to strengthen our existing knowledge with studies of sufficient power, but also, fundamentally, to derive novel conceptualizations of what “treatment” involves.

Holistically addressing motivation and maladaptive traits in anorexia nervosa: Impact on prognosis and treatment outcomes

Anorexia Nervosa (AN) is a serious psychiatric disorder, characterized by restriction of energy intake, low body weight, intense fear of weight gain, and a disturbance in body weight self-perception. Severe and Enduring AN (SE-AN) is a long-lasting (typically 5-7 or more years and marked by several unsuccessful treatment attempts) form of AN. Traditional treatments, centering on weight restoration and core eating pathology, may be part of the reason rates of treatment dropout are high and long-term outcomes are poor, particularly in SE-AN. For SE-AN patients, who have a past marked by failed traditional treatment attempts, multidimensional treatments, addressing motivation to change and maladaptive traits, may improve a range of patient outcomes outside of eating-related symptoms, such as quality of life and interpersonal functioning.The objective of this narrative review is to briefly examine motivation-related factors (e.g., hope and readiness to change), experiential avoidance, perfectionism, and obsessive-compulsiveness, and the impact of treatment approaches incorporating these individual characteristics on various patient outcomes. In conclusion, a holistic, multidimensional, person-centred recovery approach that accounts for (a) illness severity/ chronicity, (b) individual traits, and (c) motivational factors (with a secondary focus on weight gain/eating pathology), could improve quality of life outcomes, particularly in SE-AN. Additionally, integrating patient perspectives, insights, and values into developing/testing novel person-centred interventions is paramount in order to holistically address the underlying biopsychosocial causes and perpetuating factors of AN, and to better understand the trajectory of chronicity.