Introduction: 

Welcome to the twenty-third edition of the NEDC e-Bulletin.

NEDC are delighted to announce that we have been funded for another twelve months by the Australian federal Department of Health. This provides us with the great opportunity to continue our work for another year in promoting evidence based research into the prevention, early intervention, treatment and management of eating disorders through our online communication activities, our regional meetings and our partication in the wider mental sector.

This month is also the two year anniversary of the launch of the NEDC e-Bulletin. Over that time we have published over 90 articles including interviews with experts, feature articles highlighting the latest research, events and resources and opportunities to get involved.

In honour of these milestones, we are highlighting some of the best received articles from the last twenty-two e-Bulletin editions.

NEDC would like to thank you for supporting the e-Bulletin and the NEDC and we endeavour to continue to provide you with all of the latest evidence based information about eating disorders into the future. If you are interested in getting more involved in the NEDC we encourage you to join the collaboration and become an NEDC member.

Contents

1. Interview with Phillipa Hay

2. Eating Disorders and Obesity

3. The Sequelae of Dropout

4. Fathers and Eating Disorders

5. Genetic Framing of Eating Disorders

6. Resource Highlight

Evidence Informed and Evidence Generating Practices

In September 2012 the NEDC National Eating Disorders Framework: An Integrated Reponse to Complexity 2012 was approved by the Department of Health and Ageing. This month, we are profiling the implementation principle: Evidence Informed and Evidence Generating Approaches, through an interview with the Deputy Chair of the NEDC, Professor Phillipa Hay.

Q: What is the difference between evidence informed and evidence generating and why are both needed for eating disorders?

PH: Evidence informed practice is based on what is known about what works, with respect to the treatment of eating disorders. Basing clinical practice on scientific evidence is the hallmark of “Western” medicine. Long before the advent of Randomised Controlled Trials (RCT’s) in clinical practice, doctors have been basing their practice on science. Traditionally, this was what differentiated Western medicine from more complementary approaches. But today, even complementary medicine is basing studies on RCT’s, in an effort to keep up with more widely accepted forms of medical practice.

Evidence generating practice is done without hard evidence, but is practice that is continually assessed, evaluated, and reviewed collaboratively with the patient and treatment team, in accordance with the scientist-practitioner model. In clinical practice, this involves, for example, taking measurements before and after treatment with a view to helping inform the state of knowledge about the efficacy of treatments.

Both approaches are needed in the field of eating disorders, because while we do have quite a robust understanding of treatment options for Bulimia Nervosa, and how to establish recovery in a physical sense for Anorexia Nervosa, no one specialist psychotherapy stands out for Anorexia Nervosa. In addition, we have limited understanding of some of the mixed presentations of the eating disorders under Eating Disorder Not Otherwise Specified, for example, Binge Eating Disorder.

Q: How would implementing the principle of evidence informed and evidence generating approaches change the experience of treatment for people who have an eating disorder?

PH: Theoretically, this approach should enhance the outcome for people with an eating disorder as in this context, it creates a milieu where the goal is continual improvement and there is an expectation of either a good outcome or a critical appraisal as to why outcomes were poor.

Clinical data collected throughout treatment can also contribute towards clinical research. However, it is important to conduct any clinical research within treatment with respect and sensitivity, so that patients do not feel that they are merely “data” being used for evaluation. Evidence based practice should always be based on science, but also tailored to an individual’s unique presenting problems and specific treatment goals. Clinicians should be using evidence informed practice where it is available, to ensure that the treatment tools they are using are considered up-to-date and efficacious. In lieu of hard evidence, continuous evaluation of practices is in the spirit of evidence generating approaches.

Q: How are people with a personal experience of an eating disorder involved in evidence informed and evidence generating practices?

PH: A collaborative approach to the treatment of an eating disorder is advocated as best practice, so by this measure, the individual with a personal experience is necessarily involved in both evidence informed and evidence generating approaches, to reduce the burden of illness.

There are a couple of ways that the individual’s personal experience can be used to inform the evidence and practice:

• Involvement in a research project (e.g. clinical trial)
• Active collaboration with the therapeutic team during treatment for practice appraisal and in quality assurance
• Heading their own research into broader based outcomes

Q: Who is responsible for determining the quality of evidence based practice? How do we ensure the safety and appropriateness of these strategies?

PH: There is no one body responsible for oversight of this practice. Quality of assessment and practice is a key feature of professionalism, and there are various quality assurance methodologies used by different sectors (in terms of professions, and public and private domains). For example, the Royal College of Psychiatrists (UK) requires clinicians to complete a quality assurance project during their training.

With respect to ensuring the safety and appropriateness of these strategies, currently we don’t have a good answer to this, as it is much more difficult to determine. The Australian Health Practitioner Regulation Agency (AHPRA) requires practitioners to engage in continuous professional development, but this is not akin to determining the safety and appropriateness of the evidence based practices they use.

In the future, the NEDC could take the lead in facilitating, monitoring and creating a professional environment for evaluating practices. In essence, this would involve providing safe and appropriate tools for practitioners and having oversight for how these tools are used in practice. This would be quite an ambitious undertaking nonetheless.

Q: Fairburn (2005) suggests that the evidence supporting the efficacy of treatments for Anorexia Nervosa is limited. How do we propose to fill these “gaps”? What do we rely on in the meantime?

PH: We need to encourage research across the spectrum, from case studies and clinical trials right through to randomised controlled trials. In the meantime, we practice what we do know works:

• Specialist care for most adults with Anorexia Nervosa, and family-based treatment in adolescents and children
• Treatment within multidisciplinary teams
• Intervening early

We also have a good idea of what doesn’t work:

• Leaving patients alone to get better on their own – eating disorders often become chronic if untreated and less responsive to interventions

Q: Is there scope for a national data collection strategy (from the perspective of the NEDC)?

PH: A national database across clinics in Australia would provide rich data for answering more questions about the effectiveness of treatments in the “real world”. If we could link primary care, hospital and specialist eating disorder databases, we could potentially reduce the gap in the continuum of care.

For example, the Centre for Health Services Research at the University of Western Sydney in collaboration with other institutes is involved with a population health database linking hospital services with Medicare data and private health care. While this approach will still not capture all the information on who is accessing treatment, it does provide an insight into the relevant pathways into care.

A project to set up a national eating disorder specialist database with potential for data linkage would be an ambitious undertaking for the NEDC, but one to consider in the future.

About Phillipa Hay

For more information on this and the ten other principles that make up the National Eating Disorders Framework, please check NEDC publications.

For the latest research evidence on eating disorders, please visit the NEDC Research & Resources.

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Finding the Balance in Prevention and Health Promotion

By Dr Hunna Watson and Julie McCormack

To some, obesity and eating disorders seem as different as night and day. The specialists who work in one field may have an altogether absent understanding of the other. Yet when we consider the individuals affected, we see that eating disorders and obesity have more in common that first appearances point to:

• Disordered eating is higher in obese and overweight individuals compared to normal weight individuals
• Longitudinal research shows that those who diet and use unhealthy weight control practices are at risk of both eating disorders and obesity
• A lifetime history of binge eating disorder is associated with severe obesity (BMI ≥ 40 kg/m2)
• Among Australian adults, the prevalence of comorbid obesity and eating disorder behaviours quadrupled from the 1990s to 2000s - rising more than the prevalence of obesity or eating disorder behaviours alone

In our prevention efforts, each field targets many similar outcomes. Prevention interventions aim to reduce risk factors and enhance protective factors to promote positive health outcomes. Eating disorders and obesity have shared risk factors, including being overweight in childhood, weight bias and stigmatisation, childhood weight-related teasing, hours of watching television, media and marketing exposure, dieting and disordered eating, poor body image, depression, and family focus on weight. Shared protective factors include enjoying physical activity, weight, positive body image, high self-esteem, eating breakfast every day, family modelling of healthy behaviours (e.g., avoiding unhealthy dieting, engaging in physical activity, having regular meals), and regular and enjoyable family meals.

Perhaps eating disorders and obesity have more in common than not? An implication of understanding eating disorders and obesity as two sides of the same coin is that coordinated and consistent messaging to promote health outcomes is both efficient and achievable. Health promotion and prevention efforts that actively target eating disorders or obesity, or preferably both in a coordinated manner, can focus on discouraging dieting, emphasise a positive and healthful approach to nutrition, regular eating patterns, accentuating personally enjoyable physical activity, health as a possibility for all – at any size and shape, promote critical consumption of media messages and marketing, encourage reduced screen time (TV, computer, video games), positive parent role modelling of attitudes and behaviour (eg; around food, body and exercise), regular and enjoyable family meals, develop a positive and responsible fashion industry, support urban design that enable healthy lifestyles, and establish policies that reduce risk of harm such as school and workplace policies on weight-based teasing.

By understanding the overlap between obesity and eating disorders we are empowered to promote a healthy, fulfilling society for all.

References

Watson, H. J. (2011). Evaluating the risk of weight-related public messages. Sydney: National Eating Disorders Collaboration.

Watson, H. J., & McCormack (in press: expected date of publication: April 2013). Eating disorders and obesity: Conflict and common ground in health promotion and prevention. In R. Ahmed & B. R. Bates (Eds), Health communication and mass Media: An integrated approach to policy and practice. Farnham, Surrey UK: Gower Applied Research/Ashgate Publishing Group.

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Dropout from treatment for the eating disorders has far-reaching consequences

In spite of improvements in treating eating disorders, research consistently shows that many are leaving the pathways of care without undertaking a full course of treatment, and as such, putting their recovery at risk. Those who drop out of treatment are unlikely to recover on their own and are more likely to have poor long-term outcome. In addition, high dropout rates significantly limit the validity, reliability and generalisability of treatment outcome research in the eating disorders.

In a review of patient dropout, Mari Campbell (2009) identified an increase in people dropping out of treatment from 1991-2006. However, she suggested that the data is plagued by methodological issues, in particular:

• The definitions of the criteria used to identify dropouts in the research literature are vague or missing, and therefore limit comparability and replication across studies
• There is a lack of theoretically driven interventions to target dropout

In order to understand the scope of the problem and give people the best chance of engaging and remaining in care, Campbell indicates the need to learn from those clinicians who have succeeded in reducing dropout and use this learning to plan services and adapt treatments appropriately.

Campbell, M. (2009). Drop-out from treatment for the eating disorders: A problem for clinicians and researchers. European Eating Disorders Review, 17(4), 239-242.

A critical examination of the definitions of dropout used in research studies

A highly variable rate of dropout from treatment for anorexia nervosa has prompted current researchers at the Institute of Psychiatry, King’s College London, to investigate this phenomenon with the aim of increasing the consistency of dropout reporting and facilitating greater understanding of why patients leave treatment prematurely, and ultimately in increasing treatment engagement and completion in anorexia nervosa.

In a systematic review of treatment studies, DeJong, Broadbent and Schmidt (2012) found that the dropout rate in outpatient care for anorexia nervosa ranged from 4.8% to 100%. These rates were affected by factors such as illness severity and treatment approach.

These factors aside, the researchers have also identified that one of the greatest challenges in trying to draw conclusions around dropout from treatment in anorexia nervosa is the lack of consistency in how this concept is defined and reported across studies. DeJong et al., suggest moving away from the label “dropout” and adopting a less pejorative term such as “withdrawal”. In addition, they propose a reporting structure for withdrawal from treatment that they believe will facilitate better understanding of the factors that contribute to dropout.

DeJong, H., Broadbent, H., & Schmidt, U. (2012). A systematic review of dropout from treatment in outpatients with anorexia nervosa. International Journal of Eating Disorders, 45(5), 635-647.

Predictors of dropout from outpatient treatment for eating disorders

A recently published Australian study by Carter et al. (2012) collected data from referrals to a public specialist eating disorder service for youth and adults in Perth, Western Australia, between 2005 and 2010. Of this sample, 45% dropped out of treatment. The primary aim was to identify factors that increase a patient’s risk of dropping out from treatment for an eating disorder.

Based on the 45% of the sample that dropped out of treatment, the results identified both individual and process-based factors that were significant predictors of dropout.

The researchers argue that investigation of the time spent on the wait list for treatment is important because it may be easier to address and modify than individual patient characteristics. The findings suggest that implementing strategies and providing resources for eating disorder services to reduce waiting list times may provide a good opportunity to minimise dropout from treatment for eating disorders in the future.

Carter, O., Pannekoek, L., Fursland, A., Allen, K. L., Lampard, A. M., & Byrne, S. M. (2012). Increased wait-list time predicts dropout from outpatient enhanced cognitive behaviour therapy (CBT-E) for eating disorders. Behaviour Research and Therapy, 50(7–8), 487-492.

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A number of years ago at Princess Margaret Hospital for Children in Perth a group of fathers whose children had recovered from eating disorders talked together with a group of clinicians about the experiences and needs of fathers. Out of these fruitful discussions the Fathers’ Group emerged. It kicked off with a BBQ and beers and over time evolved into a core clinical service provided at the children’s hospital. Co-facilitated by fathers with children in the recovery stage and male clinicians, it provides a men-only forum where dads can talk with other dads, about the experience and role of fathers in recovery. In this article we hear from Dave about his experience as a father of a child with an eating disorder, and how other dads helped him with his journey.

My Experience as a Father of a Child with an Eating Disorder

As a father of a child who has suffered from an Eating Disorder I feel I can now look back and realise how much this illness has consumed not only my child but all my family members and indeed loved ones.

Being a father, I can only describe my own feelings and thoughts throughout this journey and although all eating disorders differ in many ways, I feel some of the emotions and thoughts shown by other fathers I have met are very similar.

I would encourage any father in this situation to connect with other people. Sometimes your hope can come from someone else’s experiences.

As a father, from the day my children were born my purpose in life changed. I instantly became the proudest man in the world and I accepted all the responsibility's that came with raising a family. I also felt the need to fix everything whether it was a bike tyre or a broken heart, and to be honest I thought I was doing quite well until my daughter Eva developed an eating disorder. All of a sudden I wasn't in control. Anorexia had taken that from me.

After a long and tiring period trying to 'fix' this illness myself, I realised that maybe I couldn't fix everything alone and that we needed professional help. Enter the Princess Margaret Hospital Eating Disorders Program.

The day we took Eva to PMH via the emergency department, was just as emotional as the day she was born, but for totally different reasons. Instead of pride I felt guilt that I couldn't protect Eva from this illness. Once we entered the program I felt that no matter how long or hard our journey would be we would not be alone as we had a team of very professional and compassionate people on our side.

While Eva was hospitalised I was introduced to the PMH EDP Fathers' Group. My first thought was "do I have enough energy to attend a meeting?" because it was at a point when Eva’s illness seemed to be setting in more and more every day. But I had nothing to lose, only gain, and at that stage even a small chance of a gain was not to be passed up.

On the first night that I attended the Fathers' Group, I was so unaware of what to expect. But looking back, that night was probably the start of my journey out of the emotional bunker I had built around myself. To be in a room with other dads going through similar situations to myself both past and present was, in a way, a comfort. I could open up and tell my story whether it be good or bad and know that I wasn't going to be judged, just as I would listen to other fathers' stories in the same way.

After that first Fathers' Group meeting I was driving home and I felt I had had a big weight lifted off my shoulders. I suddenly realised the benefits of talking and expressing my feelings, ironic in a way as that is what an ED patient may be encouraged to do.

As a Dad in a very scary and relatively helpless situation, I tended to think a lot but talk very little. The PMH EDP Fathers' Group helped me to open up and talk freely without having any feelings of guilt or failure. This had a positive affect not only with me but with relationships around me including my wife and son.

As our journey has been on the improvement for a while, I still reflect upon the education and support we received from the PMH EDP and in particular the Father's Group. I feel it has been an invaluable link in the chain of recovery for me and my family and I would encourage any father in this situation to connect with other people, especially other dads. Sometimes your hope can come from someone else’s experiences.

That feeling of pride I experienced when Eva was born is now the same feeling I have knowing that she, myself and my family are surviving such a taxing journey as anorexia.

For more information on the father's support group contact the Princess Margaret Hospital.

For more information on the role of family in the treatment and management of eating disorders read our report from Australia's first eating disorders conference for families and carers.

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A strategy for reducing stigma

Despite the serious nature of eating disorders, they are not well understood. In the past century, many myths have flourished; characterising eating disorders as a disease of underweight “white upper-class females” who are engaging in a “lifestyle choice” or “phase” due to vanity. Common misconceptions continue to define individuals with eating disorders are self-centred, fragile, unreliable and attention-seeking, and that these individuals “have only themselves to blame”.

Scientific evidence has been instrumental in overturning myths and generating break-throughs in prevention, health care and public policy, yet research still lags behind understanding how to reduce stigmatizing attitudes and beliefs. Recent evidence has suggested that explaining eating disorders as biologically-based psychiatric disorders is helpful for countering stigma in eating disorders, despite findings to the contrary for other mental illnesses, such as schizophrenia and other serious mental illnesses. This may be because eating disorders stigma centres on personal responsibility.

Eating disorders are plagued by “volitional” stigma; people with eating disorders are often perceived as choosing to behave as they do. Surveys respondents have indicated that people are more responsible for eating disorders than schizophrenia, depression, panic attacks, and dementia (Crisp, Gelder, Rix, Meltzer, & Rowlands, 2000).

Genetic involvement relieves the sense of responsibility for causing the disorder. It may make mental illness appear more serious and disease-like and volition less plausible by focusing on elements outside of a person’s control. In support of this hypothesis, describing anorexia nervosa in terms of genetics has been shown to elicit less blame or responsibility, as well as less perceived triviality, weakness, and selfishness (Crisafulli, Thompson-Brenner, Franko, Eddy, & Herzog, 2010).

Promoting greater awareness of the role of biogenetic factors in the development of eating disorders might also be conducive to greater recognition of the severity and public health significance of these conditions and greater acceptance by those diagnosed with an eating disorder of the need for medically oriented interventions where indicated, such as treatment from a psychiatrist and/or the use of psychotropic medication.

However, there is the risk that biological attribution would indicate that the problem is an essential, defining, and perhaps immutable characteristic of the person. This “genetic essentialism” could draw attention away from the role of developmental and/or psychosocial factors in the development of disordered eating and the need to address these factors in treatment and recovery. Furthermore, findings from a recent, qualitative study suggest that promoting biogenetic accounts of aetiology may have the effect of reducing motivation for change and, perhaps, engendering a sense of helplessness by highlighting the need for treatment that is not currently available.

For these reasons, promoting adherence to a biogenetic model of mental illness at the exclusion of other causal explanations is not the most effective way to reduce the stigma toward individuals with eating disorders.

It is important that our responses to eating disorders address the interplay between genetic and personality vulnerabilities and social and environmental triggers. An alternative approach would focus on improving awareness and understanding of the risk factors that occur at the population level and the distress and disability associated with these. A strategy of this kind has the potential to improve awareness of the public health significance of eating disordered behaviour and reduce the stigma of sufferers without encouraging fatalistic, reductionist, and self-fulfilling genetic prophecies.

References:

Crisafulli, M. A., Thompson-Brenner, H., Franko, D. L., Eddy, K. T., & Herzog, D. B. (2010). Stigmatizing of anorexia nervosa: characteristics and response to intervention. Journal of Social and Clinical Psychology, 29(7), 756-770.

Crisp, A. H., Gelder, M. G. Rix, S., Meltzer, H. I., & Rowlands, O. J. (2000). Stigmatisation of people with mental illnesses. British Journal of Psychiatry, 177, 4-7.

Easter, M. M. (2012). "Not all my fault": Genetics, stigma, and personal responsibility for women with eating disorders. Social Science & Medicine, 75, 1408-1416.

Mond, J. (2013). Eating disorders as “brain-based mental illnesses”: An antidote to stigma? Journal of Mental Health, 22(1), 1-3.

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