By Professor Stephen Touyz FAPS, Professor of Clinical Psychology, School of Psychology, and Director of the Centre for Eating and Dieting Disorders, Boden Institute of Obesity and Nutrition, Exercise and Eating Disorders, University of Sydney, and Co-Director, Beumont Centre for Eating Disorders, the Hills Private Hospital
Anorexia nervosa is a mental and physical disease that was recognised in France in the 19th Century, usurped for England by Queen Victoria’s physician, and subsequently adopted by many thousands of Americans. (Beumont, 1991)
According to those grand narratives embodied in DSM-IV and ICD-10, anorexia nervosa (AN) is merely regarded as part of the spectrum of eating disorders. This categorisation not only distorts what we have since come to know and understand about the nature of this debilitating disease, but also trivialises its seriousness (Beumont & Touyz, 2003). There is now a general consensus that AN must be regarded as one of the most serious chronic diseases of adolescent girls and young women. This is a rather profound assertion to make but there is growing evidence to support it.
Anorexia nervosa meets most of the criteria which one would normally associate with the seriousness of a disease. These include its prevalence, mortality, chronicity, the impact it has on the sufferer’s life, family dysfunction and its effects on society at large. On each of these measures, AN is very severe. Its point prevalence for girls aged 15-19 years is 0.05 per cent, and about half as much for women aged 20-24 years. In these groups it is ten times as common as insulin dependent diabetes mellitus. The lifetime risk of a woman developing AN is half that of schizophrenia. Long-term follow-up studies of more than 20 years duration have reported mortality rates of approximately 20 per cent. This is clearly not an acceptable state of affairs for a disease which, after all, usually starts around adolescence.
The following facts should remove any lingering doubts as to whether AN should be construed as just another eating disorder or within a transdiagnostic framework of eating disorders.
Why anorexia nervosa is a serious psychiatric disorder
Unfortunately, those who do not go on to make a full recovery are likely to suffer from major, persistent physical abnormalities, including osteoporosis and anovulation, as well as psychiatric sequelae such as chronic dysthymia or major depressive disorder and obsessive compulsive symptoms. In addition there are debilitating and sometimes profound psychosocial handicaps, including isolation and failure to establish autonomy and independent living. The social handicap experienced by so many of these more chronic patients is as great as that found in schizophrenia. The burden that AN places on society is often underestimated and furthermore places a considerable load on existing hospital services, which often lack the highly specialised treatment services that such patients are entitled to. The National Eating Disorders Collaboration, which is funded by the Commonwealth Government, has as one of its key objectives to identify the gaps in providing treatment for patients with AN.
Professor Michael Strober, the editor of the International Journal of Eating Disorders, has provided us with a sober reminder as to what we can expect when AN is not treated or does not respond to existing treatments and goes on to develop a chronic course.
Sadly, it is only a matter of time before even the strongest bond to the person chronically ill with AN withers, frayed by years of fury, despair, and resignation, unable to hold firm against the unrelenting defense of ideas for which there is no single shred or truth or evidence. It will come when the family has endured what they consider to be the final, painful offense, when the seductive strand of hope is declared lost to madness forever. It will start as before, how she is now ready to consider her poor health with a more reasoned mind, and that she truly wishes an end to the misery brought on her by her illness. It is not that the wish for change at this particular moment is contrived, or that the dialogue in which sorrow for the agony she has caused is not reflected honestly. But when AN advances to this chronic state, the possibility that one day these splits in consciousness will cohere has passed. And so, too, will the moment of hope slip away yet again, flattened by the same well-worn litany of worries about becoming fat, of there being too much oil on her food. But no longer will anyone truly care. (pp. 227-228)
AN is an illness which is primarily defined by excessive self-induced weight loss and is characterised by an intense drive for thinness. This develops rapidly into an intense fear of weight gain, normal weight and ‘fatness’. This is usually associated with a body image disturbance where the sufferer is unable to accept that there is no need for weight loss and experiences herself as ‘fat’. Since the 1970s, these two psychological components have been conceptualised as central to, and invariably causal of, the pathological behaviours that ensue in AN (Maquire, 2009). These components, along with weight loss, have formed the central core of diagnostic criteria for this illness. Ancillary psychological features are present in a majority of cases but are not imperative for a diagnosis to be made. These include perfectionism, obsessionality, depression, an egosyntonic attachment to the illness like no other and a poor motivation for recovery. All these need to be taken into account when developing a comprehensive treatment approach.
Behaviourally, AN expresses itself with extreme dietary restriction often accompanied by compensatory behaviours designed to further reduce weight. These include self-induced vomiting, laxative abuse and excessive exercise. In some cases patients also engage in a more generally disordered eating pattern including binge-eating. Such patients are often referred to as having the binge-purge subtype of AN.
AN is associated with a number of worrisome physical sequelae. Relationships between the extent and nature of the core behaviours of the illness and its physical sequelae have been well established. The direct relationship between the intensity with which restrictive and compensatory behaviours are used and weight loss of course is at the heart of this illness. Physical symptoms include loss of menses, electrolyte imbalances, as well as cardiac and thyroid dysfunction.
Behaviours and the psychological distortions become reinforced over the passage of time. This comes about as a result of the interplay between the core symptoms which become more complex. These are driven by the anxiolytic effects of not only weight loss and purging but the induced effects of starvation as well. As a result, the patient engages in an ever-increasing escalation of weight inducing behaviours with the likelihood of serious adverse medical consequences.
The interplay of psychological, behavioural and physical symptoms differs between patients and results in a heterogeneity in the presentation of such patients. Symptoms vary in both kind and intensity although the significance of such variations is still the subject of much debate. With the introduction of DSM-V in 2013 and looking ahead at DSM-VI, we felt that AN would be better served if it was staged as an illness. Although staging is not commonplace in psychiatric illness, it would more accurately reflect the heterogeneity of presentations between patients.
We have now developed the Clinician Administered Staging Instrument for Anorexia Nervosa (CASIAN) (Maguire et al., 2011) to assess the severity (not unlike cancer) in AN within a four-stage model of illness severity (Stages 1-4). The CASIAN has been found to be a reliable instrument that appears to demonstrate validity and promising signs of prognostic value.
Staging anorexia nervosa
Those patients that are given a Stage 1 or 2 category by the CASIAN are likely to be treated as outpatients or day patients, whereas those with Stage 4 are hospitalised. The staging assessment also allows those with a sub-threshold presentation to be correctly diagnosed with Stage 1 illness rather than an Eating Disorder Not Otherwise Specified (EDNOS), as this often lulls both the patient and the family into a false sense of security that they do not have AN. Early identification and treatment is of the absolute importance and staging allows this to occur.
The four-stage model has the potential to provide a system of classification for eating disorders on the anorexic spectrum that can for the first time reliably deal with the full spectrum of illness presentations. Furthermore and perhaps more importantly, it has the potential to provide the framework for the development of tailored treatment approaches in AN so as to improve the outcomes for those who suffer from this most debilitating psychiatric illness, and the families and carers that support them.
There has unfortunately been little controlled treatment research on AN. Why should this be for such a serious illness that we have known about for over 100 years? One of the major difficulties that nearly all researchers have encountered is the inability to recruit sufficient subjects into their treatment trials. More importantly, most trials are dogged by poor compliance, with patients either being withdrawn from treatment as they become too ill or they themselves drop out. However, there is one notable exception to this: family-based therapy for adolescents with AN. This treatment was developed at the Maudsley Hospital in London and has now been written up in a manual format.
This treatment is based upon the work of innovative family therapists such as Minuchin, but is radically different in that it elicits the parents' aid in getting the patient to eat and then gradually releasing the control of eating back to the patient. Thereafter, the therapist works with the family to help the adolescent negotiate the developmental challenges of adolescence (Lock, le Grange, Agras & Dare, 2001). There are now several multisite, collaborative randomised control trials that provide support for the efficacy of such family-based treatment. With the absence of the effective treatments for patients with AN, patients and their families are desperate to hear of a treatment that works. Positive findings are often greeted with overenthusiastic claims of overall success. Unfortunately, there is a need to dampen the claims of a panacea, in that only around 60 per cent of adolescent patients fully recover from such family-based treatment and only if they are usually treated within 3.5 years of becoming ill.
Such findings provide further support for our staging model as early identification, diagnosis and treatment is likely to be crucial in the vast majority of patients who go on to fully recover. However, what about the 40 per cent of patients who fail to respond or who present with treatment after suffering from this illness for four years or more? There is also emerging evidence that 20-30 per cent of AN patients have a more malignant form of the disease which may not respond to current treatments. Unfortunately the evidence to date regarding the treatment of such patients has been at best sobering, but all this might just be at the point of change.
Despite the absence of an effective evidence-based treatment for patients with AN (other than the Maudsley family-based approach), it is important to recognise ‘insufficient evidence’ and ‘no evidence’ are not synonymous with ‘evidence of ineffectiveness’ (Carney, Tait, Touyz, Ingvarson, Saunders, & Wakefield, 2006). The Royal Australian and New Zealand College of Psychiatrists Clinical Practice Guidelines Team for AN have argued that, “in the absence of evidence, clinical consensus is a legitimate basis for action”. These guidelines propose a multidisciplinary team for optimal treatment. They recommend the team include a specialist in physical medicine (i.e., a general practitioner/family physician or paediatrician depending on the patient’s age), a clinical psychologist, dietitian, nurse (if in hospital), and other allied health practitioners such as occupational therapists and physiotherapists. Irrespective of who treats the patient or what treatment is provided, there is one golden rule that should never be compromised.
The golden rule in treating patients with anorexia nervosa
If one is to successfully treat a patient with AN then the restoration of nutrition is an essential first step. It is imperative to curb weight loss and then reverse it.
There is now a smorgasbord of options for treating adult patients, including well established outpatient treatments, innovative day hospital programs and highly specialised inpatient units (Touyz, Polivy & Hay, 2008). Such programs use a combination of techniques including nutritional counselling (often by very experienced dietitians working exclusively in the field of eating disorders), behavioural experiments (interventions), cognitive techniques, exercise counselling and family interventions.
Most clinicians work within a CBT framework and clinicians who already have experience or expertise in the delivery of CBT will find the principles involved to be similar, but with one major exception. Most patients with AN view their symptoms as egosyntonic and are not only petrified by the thought of change but actively plot and work against it. As a result, working with such patients poses unique challenges that ultimately make treatment both an interesting and rewarding experience.
Researchers have started to look at the newer, exciting third wave therapies such as acceptance and commitment therapy, a recent mindfulness-based behaviour therapy which has been shown to be effective with a diverse range of clinical conditions. However the evidence for its effectiveness in AN is yet to be determined. Others are going back to behavioural experimentation and in the words of Glenn Waller, a well known expert in this field, “putting the B back into CBT”. Therapy is not only about ‘talking the talk’ but rather ‘walking the walk’. Patients who are often academically very bright are prone to intellectualise without making any substantial changes in their behaviours.
Perhaps it will come as no surprise to many that Australia is now leading the world in investigating what works in the psychological treatment of AN. There are at least four major RCTs underway funded by the National Health and Medical Research Council. All four have strong international collaboration. Some of these have interesting acronyms such as SWAN (Strength Without AN), LEAP (Loughborough Eating and Activities theraPy) and
C-AN (Chronic AN) and will dominate the eating disorder research landscape over the coming years not only in Australia but the world at large. We eagerly await the outcomes of these seminal studies.
With new knowledge emanating out of neuroimaging studies and being applied directly to treatment such as cognitive remediation therapy, interesting and exciting times lie ahead. There is much hope riding on these and other related trials abroad to find new effective ways to treat patients with AN. MANTRA (Maudsley AN TReatment for Adults) has been based on years of extensive research at Kings College London and the Maudsley Hospital, and comprises treatment on brain research and neuropsychology. There are clearly exciting developments in store as our understanding grows as to how undernutrition may impact on the brain. We are likely to witness new strategies to include in our armamentarium to more effectively treat patients with AN and alleviate the intense suffering of those afflicted as well as their carers.
The author can be contacted at firstname.lastname@example.org